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fifa
10-04-2014, 01:34 PM
Hi, everyone -

I've been waiting since the end of August to have my account activated so I could post. Finally! For two years now, I've been reading the forum, knowing that one day I would schedule my surgery. Every single one of you has been of great help to me - thank you.

In 1987, I had back surgery (laminectomy and diskectomy) for a herniated disk at L5-S1. The surgery and recovery went well. Over the years, I've had intermittent bouts of pain and disability, but for the most part I've managed those well. Numerous MRIs showed mild lumbar scoliosis and several herniated disks in the lumbar area, for which I've had steroid injections, physical therapy, anti-inflammatories, etc. About four years ago, the pain got markedly worse after a coughing spell (I heard the "pop"). For the first time in 27 years, my primary care physician decided to order a set of plain films - standing films. Upon standing, my "mild to moderate" lumbar scoliosis increases to "marked scoliosis." When lying down, my lumbar curve is in the 27 degree range. However, upon standing, the curve now becomes 43 degrees. Three years ago, the standing curve was 31 degrees (January, 2011). In June, 2012, the standing curve had increased to 39 degrees, and now (September, 2014) is at 43 degrees.

Four years ago, when we found out the extent of the scoliosis, I was offered an anterior-posterior fusion with instrumentation from L3-S1. In fact, the ortho group locally put me on the emergency surgery schedule because my bone scan showed the spine was unstable. I have listhesis and subluxation at several levels, plus a couple of broken facet joints. The ortho group locally told me the surgery they offered would fix the problem. Suffice it to say I was skeptical. I sought a second opinion from the university teaching hospital here locally. They offered a posterior approach and a fusion from L4-S1 with instrumentation. They said that if anyone told me they could fix my scoliosis, they were lying. That was December, 2010.

After much research online, I obtained a third opinion from Dr. Buchowski in St. Louis in June, 2012. He actually told us that both procedures offered locally were contraindicated. He offered a posterior fusion with instrumentation from T10 to the sacrum. Scared the crap out of me, so we went home to consider options and maybe find an alternative. He was fine with "watchful waiting." Dr. Buchowski spent a LOT of time with us that day, acted like he had no other patients except me, and we had a great (but scary) visit.

Since June of 2012, I've been muddling along, knowing that one day I would have this "giant" surgery. My ability to stand has decreased to where I only have about five minutes before I have to sit. Walking is worse than standing - every step compresses and uncompresses the curve. Hard to explain. However, the absolute worst pain that I have is in my ribcage, right under the right breast. There is a some muscle that feels like it is attached to the sternum, and it spasms like a charley-horse when I bend over. I have to get my hands above my head and arch backward to get it to go away, but it never truly goes away. My pelvis is now tilted, and the psoas muscles on the right are shortened to where the ribs on the right are sitting directly on top of the pelvis. I've lost about three inches in height in the ten years (no osteoporsis yet - DEXA scan is perfect).

In August of this year, I was doing my usual yoga routine when I twisted at the waist. There was a "pop" in my spine so loud that the dog actually heard it. It actually made me cry out when it happened. When I tried to stand, I couldn't feel my right foot. There was no position I could get into to relieve the pain. Turns out I broke another facet joint. The pain is better now and I can feel my foot again. This whole four years of knowing that I needed surgery and putting it off, never once did I consider that I might actually do something to where I no longer had a choice about surgery. That is hard to explain. I had a "one of these days" mentality...believing I could push through the pain and just limit my activities and I could get through it. So, I'm really sorry now that I put it off, even though it was just a couple of years. Because of the instability in the spine, now I'll have to have the pelvic fixation, too, which I didn't need two years ago when I saw Dr. Buchowski.

It's been a tough road, but I'm ready. I figure a "planned" intervention is way better than an "emergency" intervention, especially when an emergency would have to be treated here locally. Now, it's on to St. Louis!

I hope you are all well. The posts in this forum have been extremely beneficial to me and my family as we debate, prepare, and pray. Thank you all very much. If anyone here has any advice, suggestions, anything - I would be grateful to hear from you. Also, if anyone has any specific experience with Dr. Buchowski and/or Barnes Hospital in St. Louis, I would love to hear what you have to say (positive or negative).

Fifa
(soon to be bionic)

Karen5
10-04-2014, 02:02 PM
I don't have much I can offer; I'm new to this myself. But I'm also a new member, and I just wanted to say hey and I hope your surgery gets you relief!

fifa
10-04-2014, 07:08 PM
Thanks, Karen. I hope you are doing well. :) I saw your daughter's x-rays. I haven't figured out how to post mine yet, but will be doing that soon. She sounds like a trooper!

I had a hard time getting my account activated (I think you did, too?). I e-mailed the scoliosis admin e-mail plus Joe's several times each and finally was activated after MariaF intervened. I was getting anxious!

Hope you are doing well. I'm hanging in there and pretty scared about what lies ahead recovery-wise, but I'm hopeful. I'm hoping to get my life back soon!

Fifa

jrnyc
10-04-2014, 09:27 PM
hi fifa
welcome...

i am just shocked that no "standing" films were taken sooner...
i thought X rays while standing were the simplest, cheapest to
do and the first ones doctors ordered, vs. more expensive,
MRI's, CAT scans, myleograms, etc....especially when dealing
with insurance companies who will be paying for the radiology.

best of luck with your surgery
jess

PeggyS
10-04-2014, 09:44 PM
Hi Fifa!

Welcome to the forum!
You & I will be having surgery with Dr. Buchowski, just 2 weeks apart!
I agree, it's better to 'choose' the surgical intervention than to have to deal with an emergency. I've had plenty of time to get our house & lives organized. I know there'll be some things I won't get crossed off my 'to-do' list, but overall, I'm feeling prepared. Every now & then the edge of feeling panic gets a little too close!
That pop in your back and the resulting pain had to be terrifying!
How far is St. Louis from your home? We live in Columbus, OH - 400 miles away. Will you be staying in St. Louis for a month? We're renting an apartment for close to the same price as a nice hotel or extended stay. We stayed at the Parkway Hotel for my pre-surgery testing. Very nice.

titaniumed
10-04-2014, 11:23 PM
Fifa

I also waited.....34 years to be exact, but after having talks for 2-1/2 years with my surgeon, my procedure became complicated. I was rejected in the end and I had to beg. I had a massive L1-Pelvis anterior (ALIF) with partial corpectomy due to advanced end plate damage. Degeneration in adults over 50 can really get serious....They flipped me over for the posterior operation 2 days later.

I often think about the intense amount of pain I endured before my surgeries, and was fortunate. I really had no decision since one doctor gave me a year to live....Decision making on an elective surgery is something we put on the back burner, and pain is a strong signal that organs are suffering. “Jean-Martin Charcot”

So, I understand your situation completely....

For anxiety, I ran..... kinda like Forrest Gump. (smiley face) I forgot that movie and why he ran???? I need watch it over again. Running and deep breathing outdoors is what I did. I also ate well, had to lose weight, and wanted my nutritional situation and immune system at its best going in. I also took no meds at that time.

In the end, after a 2 year recovery and adapting, I came out quite well. I still snow ski after fusion surgery, and post my ski video every once in a awhile to boost people up a bit. Here it is. I’m in the red jacket.
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=plcp

Welcome to the forum
Ed

Irina
10-04-2014, 11:56 PM
Hi Fifa and welcome to the forum. Good luck with your surgery. I was also putting mine off for a long time because I just wasn't ready. People on this forum are wonderful...welcome to the family.

Karen5
10-05-2014, 12:37 PM
Thanks, Karen. I hope you are doing well. :) I saw your daughter's x-rays. I haven't figured out how to post mine yet, but will be doing that soon. She sounds like a trooper!

I had a hard time getting my account activated (I think you did, too?). I e-mailed the scoliosis admin e-mail plus Joe's several times each and finally was activated after MariaF intervened. I was getting anxious!

Hope you are doing well. I'm hanging in there and pretty scared about what lies ahead recovery-wise, but I'm hopeful. I'm hoping to get my life back soon!

Fifa

I am well, thank you for asking :) We all have our days and moments, but we're getting through. And yes, I was another one who had trouble getting my account activated. Very frustrating when I wanted to connect with others who had similar experiences, but I'm so thankful we're in now! Your surgery is the same date as my daughter's first surgery, so I'll be thinking of you and keeping fingers crossed that you finally get relief!!

Karen5
10-05-2014, 12:40 PM
Oh! And to add pictures/your xrays, scroll down below the reply box and click on "manage attachments". That will give you a dialogue box where you cilck on "add files" then click "select files" to choose files from your computer. Hope that helps!

fifa
10-05-2014, 01:25 PM
hi fifa
welcome...

i am just shocked that no "standing" films were taken sooner...
i thought X rays while standing were the simplest, cheapest to
do and the first ones doctors ordered, vs. more expensive,
MRI's, CAT scans, myleograms, etc....especially when dealing
with insurance companies who will be paying for the radiology.

best of luck with your surgery
jess

Hi, Jess!

Yes, in retrospect, I agree with you. I think the reason was twofold - first, I always went back to the orthopaedic group here locally for my care, and my symptoms have always included radicular pain down to the toes on the right, so they went directly to an MRI every time (obviously lying down) looking for impingement, I guess. My insurance company allows me to see a specialist with no referral from anyone, so for 25 years I bypassed my primary care physician and went straight to the ortho group. The ortho group here now has their own MRI, and I have great health insurance, so I think that is the second reason. :) I mean, they all knew I was post surgery, so I assume that is why they went that way. I've been in the medical field for 25 years and I never questioned it. Didn't know anything really about scoliosis other than it meant a "curved spine." Truly, I didn't think anything of it, either. I just figured my spine had curved a bit since surgery in 1987. Never thought it would be progressive or eventually debilitating. The ortho doc here that I've seen for 27+ years (who did my surgery) never discussed the scoliosis as being anything other than a curve. I have several herniated disks, stenosis, etc., so that has always been the discussion in the office (never scoliosis). I've gained a lot of knowledge in the last four or five years.

My insurance has now changed with regard to the MRI - for the last one I had in August (when I broke another facet joint), I needed pre-authorization and it took several weeks to get it. I haven't needed the pre-auth before for that.

I was shocked when the plain films were compared to the MRI. Oh, and the developing rib hump has also gone unnoticed for the last four years, too. Again, I think no one here locally was concerned about the scoliosis since it seemed minimal on MRI, so no one has addressed it, plus no one here locally does adult scoliosis surgery.

Hope you are doing well! :)

fifa
10-05-2014, 01:43 PM
Hi Fifa!

Welcome to the forum!
You & I will be having surgery with Dr. Buchowski, just 2 weeks apart!
I agree, it's better to 'choose' the surgical intervention than to have to deal with an emergency. I've had plenty of time to get our house & lives organized. I know there'll be some things I won't get crossed off my 'to-do' list, but overall, I'm feeling prepared. Every now & then the edge of feeling panic gets a little too close!
That pop in your back and the resulting pain had to be terrifying!
How far is St. Louis from your home? We live in Columbus, OH - 400 miles away. Will you be staying in St. Louis for a month? We're renting an apartment for close to the same price as a nice hotel or extended stay. We stayed at the Parkway Hotel for my pre-surgery testing. Very nice.

Hi, Peggy!

Yes, I couldn't wait to talk to you when I saw your signature line about possible surgery with Dr. B. Don't you just love him? Hubby and I both really like him a lot. Yes, we are also getting the house organized and I'm trying to get my workplace organized, too. Hired a yard guy, carpets cleaned, bidet on the way....LOL

The day I had the last pop, August 12th, was the day I made the follow up appointment with Dr. B. I just always thought I would have a choice about when I would schedule surgery. The pop just scared me, especially since I couldn't feel the right foot. We discussed driving to Barnes that day, but I couldn't have managed the car ride.

We live in Columbia, Missouri, which is about two hours west of Barnes. We can make it to Chesterfield in about 1 1/2 hours. We've been seeing Dr. B at the Chesterfield office. So, I'm not too far away. Initially, when we saw Dr. B two years ago, we were told to plan for a week in the hospital and two weeks in rehab, all in St. Louis. If the insurance wouldn't pay for inpatient rehab, then we would stay at the Parkway and do the rehab as an outpatient. Something must have changed in the last two years, because at our latest visit, they said it would be a week in the hospital and maybe staying over the weekend at the hotel to be close by (especially if I didn't feel like making the trip home). I really don't know what to expect.

I'll definitely be at the Parkway the evening of November 9th. I don't want to drive in the morning of the 10th and ruminate about surgery in the car for two hours...I'll be wrecked and won't enjoy the operation. LOL I'm very happy that the Parkway will accept our dog (for a fee). Hubby and I are currently trying to figure out what he will do.

Soon, I'll figure out my signature line. I'm 51 years old, just by the way. Will add that to the signature as well as the xrays and such.

Did you have your myelogram and all the teaching? I'm set to do that in a couple of weeks. I'm really anxious about the myelogram. The last one I had was ten years ago, and I got a spinal headache as a parting gift. Swore I would never have another one, but apparently, I'm gonna.

Hope to meet you in St. Louie, Louie! I don't know how the private messages work yet, but you are welcome to send me one.

Fifa

fifa
10-05-2014, 03:34 PM
Fifa

I also waited.....34 years to be exact, but after having talks for 2-1/2 years with my surgeon, my procedure became complicated. I was rejected in the end and I had to beg. I had a massive L1-Pelvis anterior (ALIF) with partial corpectomy due to advanced end plate damage. Degeneration in adults over 50 can really get serious....They flipped me over for the posterior operation 2 days later.

I often think about the intense amount of pain I endured before my surgeries, and was fortunate. I really had no decision since one doctor gave me a year to live....Decision making on an elective surgery is something we put on the back burner, and pain is a strong signal that organs are suffering. “Jean-Martin Charcot”

So, I understand your situation completely....

For anxiety, I ran..... kinda like Forrest Gump. (smiley face) I forgot that movie and why he ran???? I need watch it over again. Running and deep breathing outdoors is what I did. I also ate well, had to lose weight, and wanted my nutritional situation and immune system at its best going in. I also took no meds at that time.

In the end, after a 2 year recovery and adapting, I came out quite well. I still snow ski after fusion surgery, and post my ski video every once in a awhile to boost people up a bit. Here it is. I’m in the red jacket.
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=plcp

Welcome to the forum
Ed

Hi, Ed -

I've enjoyed reading your posts and love your sense of humor! Have to admit that watching you ski in the video you posted made me a bit teary today. That's been happening a LOT lately. I'm not on meds so I can't blame that...it is either stress or perimenopause (or a combination of the two). LOL Glad you posted the video as well as your signature information. Golf Nut's tee shot has been pretty inspirational, too, as has Tap Tap (I think that's the right user name). Susan's story has kept me on the edge of my seat (praying hard for you, Susan). Even though I didn't name the others specifically, I've read all the posts (even in the "sorry I had surgery" thread) and I feel like I know you all even though you don't know me yet. I pray for us all.

I wish I could run and relieve some of the stress, improve the lungs, and lose some weight. I've lost about eight pounds just with diet in the last couple of months. I'm exhausted most of the time. With the instability in my spine currently, the only thing really holding me upright is my abdominal muscles. My abdomen is in a constant state of "crunch," if that makes sense. I hold my breath a lot to stay upright. I can't walk very far...can walk less than half a block now and then turn back. This has been quite hard to take because I've been a pretty active person up until a couple of years ago. I'm overweight and just quit smoking, but I really haven't been limited in my activities until the last couple of years. I find myself extremely short of breath with minimal exertion, and while I was a smoker, I've never been a heavy smoker, and my lungs are clear on x-ray. The movement of the ribs on my right side has greatly diminished my lung capacity. The rib hump on the right is getting more pronounced every day. I kept thinking that I could "yoga" (meditate) away the pain and push through it, but just can't anymore. The loss of height (three inches) with the collapse of the spine has just squished everything down - I can't really get my diaphragm to expand the way it should on a deep breath. Also, I'm afraid now to do anything except a few basic yoga moves (no more twisting...yikes!).

It's been a very stressful time not just for me, but for my husband. Did you have a support system at home? Did folks stay with you while you were in the hospital?

My biggest concerns right now are, in order...
1. Do I really need someone to be with me 24/7 at the hospital? This is going to be really hard on my husband mentally and logistically. I worry.
2. How limited will I be after surgery long term? Will I be able to toilet without aid? Can I garden? Can I do yoga? Can I swim?

There are other concerns, but right now, I'm most worried about my family. My job is secure, my house and office are prepared and ready, and mentally, I'm almost ready. I think there are things in the first couple of days postop that hubby doesn't need to experience, and I'm trying to spare him that, but also am scared to be alone. Hope that makes sense. That's my biggest problem right now. I'm tempted to try to tough it out alone - I mean, there will be nurses, right???? LOL I was going to hire a private nurse to be bedside, but the doc says that's overkill.

If any of you have any thoughts and/or advice, I would appreciate hearing from you.

Ed, take care, and keep those posts coming! You (and everyone) are helping more than you know, and I'm grateful. Thanks!

Fifa

tae_tap
10-05-2014, 04:23 PM
Hi FIFA! Welcome to the forum. I too had surgery in COMO and St. Louis. I live a couple hours from COMO and actually travel that direction 1-3 times a week.

The hotel connected to Barnes is great. Makes getting around easy and the staff is personable. I didn't have my husband stay in the room over night but he was there till late which is good because they really help with the pain control when you are unable to really address it. He knew the signs of me squeezing my thumbs when it got unbearable (which I didn't realize I did) and was able to address the situation.

Good luck! You will be in good hand.

Tamena

fifa
10-05-2014, 04:32 PM
Hi Fifa and welcome to the forum. Good luck with your surgery. I was also putting mine off for a long time because I just wasn't ready. People on this forum are wonderful...welcome to the family.

Thanks, Irina! I appreciate your welcoming words!

Have to admit that I really wasn't ready, either, but supposed I'm as ready as I'll ever be. It's not like it is going to fix itself and it certainly isn't getting any better! LOL

Take care!
Fifa

Irina
10-05-2014, 05:00 PM
Hi Fifa,

I am fused T6 to Sacrum and I don't have many limitations. I don't need any toilet aid, I can swim and I do it every weekend, but I only do breast stroke. Any other type of swimming is not comfortable for me, just feels odd. But I was swimming using breast stroke only even before the surgery, so may be that's just my habit.

I never gardened, so can't comment on that, but think I would be able to do it if I wanted to. I quit doing yoga. My surgeon told me that I can do yoga, but modified. Honestly, if I wanted to go to my old yoga class, I'd have to modify A LOT and it would not worth it. I won't be able to do much. But I am not heart broken about it. There are many other things that I can do now and could not do before the surgery. Like standing and walking for as long as I want. Before, all I could stomach was 5 min of standing and I needed to sit down. After half-an-hour of walking my lower back was hurting. Now I can stand in the kitchen and cook without any pain, go to museums and cocktail parties and enjoy myself, travel and walk for hours and hours until my feet (not back!) get tired. We are going to Maui for Thanksgiving and I booked a sunrise tour to Haleakala (a dormant volcano) on a windy and bumpy road and a helicopter tour over west Maui and Molokai because I feel confident in my ability to handle bumpy roads and getting in and out of a helicopter.

So, am I sad about not being able to do yoga? No!

I had my surgery at UCSF and my family was with me most of the time. I was very lucky to have them there. But some people here did it solo. You need to prepare your husband and family to what is coming because people generally don't understand full implications of the early recovery. Educate them. They need to be ready mentally too.

Good luck to you!

PeggyS
10-05-2014, 06:43 PM
I've been concerned about the amount of time I'll need my husband at the hospital, too. He has mobility issues left over from all of his surgeries. I'm hoping to go to rehab for a week, but it sounds like it's difficult to qualify. I'm supposed to stay in St. Louis til my 1st check up - 4 weeks post-op.

The myleogram was stressful because the dr & tech spent a lot of time discussing where to put the needle! I didn't develop a headache - thank goodness b/c I was all over the campus for tests.

I'm so glad to know someone else has the same doctor! Good luck.

Rise
10-05-2014, 07:23 PM
It's been a very stressful time not just for me, but for my husband. Did you have a support system at home? Did folks stay with you while you were in the hospital?

My biggest concerns right now are, in order...
1. Do I really need someone to be with me 24/7 at the hospital? This is going to be really hard on my husband mentally and logistically. I worry.
2. How limited will I be after surgery long term? Will I be able to toilet without aid? Can I garden? Can I do yoga? Can I swim?

There are other concerns, but right now, I'm most worried about my family. My job is secure, my house and office are prepared and ready, and mentally, I'm almost ready. I think there are things in the first couple of days postop that hubby doesn't need to experience, and I'm trying to spare him that, but also am scared to be alone. Hope that makes sense. That's my biggest problem right now. I'm tempted to try to tough it out alone - I mean, there will be nurses, right???? LOL I was going to hire a private nurse to be bedside, but the doc says that's overkill.

Hi Fifa,

I had surgery about 12 weeks ago at HSS (T9-sacrum) and I shared many of your fears/concerns. Immediately post op I was in PACU where visiting hours are quite limited and thankfully they manage your pain beautifully. While I remember being extremely. "Out of it" I was very cognizant of when my husband and sister were with me. Seeing me immediately after surgery was upsetting to both of them. My face was extremely swollen from the 6 hours I spent face down on the operating table. The swelling took about 2 days to go away.

From PACU I went to a step down unit for another 24 hours. My husband stayed with me most of the time until visitng hours were over. No need for private nurses in either PACU or step down. Then it was off to a regular room. Again, no need for a private nurse but having my husband there to watch out for me and comfort me was invaluable.

As far as how I was after surgery I truthfully questioned my decision on and off for the first three wweks or so. The pain killers make you a bit nuts and the fear if breaking something for me was big. I would say after week 5 I felt much more in control, stronger mentally and physically and was off all plain meds.

If you can't do a lot of exercise before surgery I really recommend at least working on your legs. Having strong legs will make life during recovery sooooooo much easier.

I may not be the best person to tell you what you can and can't do because I am likely doing way too much and am praying I don't wind up paying for it later. Assuming there are no big surprises down the road for me the surgery was the lesser of two evils. No doubt my future was not going to be an easy one if I did nothing. It sounds like you're in a similar spot.

Best of luck to you.

Risë

titaniumed
10-05-2014, 11:26 PM
I've enjoyed reading your posts and love your sense of humor!


Well thanks! I never know if I’m crashing and burning on the comedic effort.....Usually no replies means its pretty good.

After watching the Shawshank Redemption recently, at the end Andy and Red mention the words “Get busy living or get busy dying”.
http://www.youtube.com/watch?v=BLXOcyDQKtc

It was something that kind of hit home with my decision at the end....The risk had to happen no matter what and yes, I also made it to Zihuatanejo.....

I didn’t want anyone showing up at the hospital while I was in intensive care. My surgeon kept me out because he told me the pain would be a 10 with all the work I was having done with the anterior and all....but people came anyway and I never knew they showed up because the lights were on but nobody was home. I think that was the ketamine..... I lost around 5 days of mental retention. I wonder if that’s what dementia is like? I was on the strongest meds they had and was knocked out every 4 hours for 9 days. This isn’t the norm as far as immediate recoveries is concerned, since I have followed many others testimonials. Some of the younger folks are texting hours later. I couldn’t even find my phone for days or work it because my shoulder and arm were also broken (shattered humeral head) from a bad ski crash 10 days before my spine surgeries. I would be lying if I said it didn’t hurt.

People are different as far as support is concerned. I am single and well, I did have some issues with the pain and all that scoliosis has to offer, a sort of 38 yr pinnacle arose after a few days when the brain started working again. I was very upset and pretty mad. Not mad at anybody......just mad as hell. Maybe I was justified after holding it all in over the years, but there was this graveyard nurse that straightened me out with a little bit of counseling on her part. The strong meds triggered the “why” question once again. It had been many years since I re-visited that era of my teenage years. Holding it in? or whatever. I don’t know. The males of the forums don’t openly talk about these sorts of things on the scoliosis forums. I kinda like to lick my wounds privately.....

You feel tall and stiff when you first stand up....I grew 4 inches and the people that were slightly taller than me where now looking up at me. It was actually a riot seeing their faces....he he. There should be no bending, no lifting and no twisting for awhile. Was I going to take that chance? No way Jose, I was a good boy! I didn’t lift more than a dinner plate for 5 or 6 months. And walked on eggshells for a long time. All movements were done slowly and carefully during the immediate fusing period of 8 months.

Can I garden? I don’t, but many here have reported that they are now pulling weeds. I think this is at the 9 month mark. I think this one was a Lenke study! LMAO. You would think it would be depressing for a surgeon to ask a patient and have them come back cheerfully saying that they were now pulling weeds with their million dollar spines......(smiley face)

Congrats on quitting smoking. It’s a no-no for spine patients, inhibits the fusion process from the constriction of the vessels. Blood flow is pretty important in this whole thing, and bone bleeds....so walking stimulates this whole action, and keeps the guts moving while on opoids during your recovery. It also helps prevent DVT which is bad, bad, bad. I would practice your squats. I did this at the kitchen counter. Up and down, work up to a hundred a day. And diet does work! I used a gall bladder diet and lost 9# month and I wasn’t trying to lose weight. I wouldn’t have made it without the bean soup. Soup is good food.

On the subject of meds. They will give you injectable or IV meds if needed for pain and they do work well, no doubt. The main thing is that you want to be weaned to orals before leaving the hospital. I kind of left early and had to wean home alone and that was tough and couldn’t sleep. You cant sleep when you are in pain.

Ed

PeggyS
10-06-2014, 06:50 AM
Ed,
I've been wondering how soon I'll want my kindle, phone or iPad -LOL! I feel lost without at least one of them! Sounds like it could be a few days, as I'm not one of the young ones! I know you had much more extensive surgery than most. Your advice, reflections AND sense of humor are so helpful!

jackieg412
10-06-2014, 07:07 AM
Hi Fifa, we all welcome you. It took me several years to post here but I too had followed the forum for awhile. At first you will not want anyone there but I found out ,the hard way that you need someone to watch out for you. As Ed said it is a rough journey at first. I too had a t-10 to pelvis fusion I my first surgery but fractured through t-9 on the sixth day after surgery. I am an avid gardener with my million dollar spine. But I did not do much for the first year. Then I charged everything and avoid getting to the ground as much as possible. I had large planter boxes built. It has been 5 years since my surgery but I still have a limited amount of time I can stay down on the ground. So you learn to modify and get the job done.

tae_tap
10-06-2014, 07:34 AM
Ed,
I've been wondering how soon I'll want my kindle, phone or iPad -LOL! I feel lost without at least one of them! Sounds like it could be a few days, as I'm not one of the young ones! I know you had much more extensive surgery than most. Your advice, reflections AND sense of humor are so helpful!

Peg,
I may be a bit younger, but unlike Ed I had a hard time in the hospital sleeping even under the meds without the background noise of my ipad. I used it for both surgeries. Barnes does have TV's that are at your bedside, but there was a comfort of having my ipad playing instead.

I was like Ed as far as not wanting anyone at the hospital, especially in ICU. I really did not want visitors while I was at the hospital, mainly because I know how cranky I can be under intense pain and did not want to have to apologize to anyone for uncontrollable crankiness, hehe!

When I left the hospital a friend I met here on the forum, Heidi, was down for her one year follow-up with Lenke and she met me in my hotel room. She relieved Lance for a few minutes for him to pick up food and allowed me to break down from that need to remain strong and just cry it out and be honest about where I truly was as far as pain. I would not have made it through my first night without he having been there when she was.

Ed seems to have perfect comic timing to just cut through the reality of this process and calm the nerves. He is also very helpful on many more levels. He defiantly has been a huge aspect in keeping me sane the last couple of years.

This forum has a way of developing friendships that feel more like a piece of the family. The non-judgmental and the ability to be honest with others who know exactly what you are going through brings a comfort.

Tamena

susancook
10-06-2014, 11:43 PM
I agree...forget the visitors. First of all, I do not remember any of them. If close family members want to visit just to see if you are alive, fine.....then they can leave quickly.
Being in the hospital is about you....not them.
Susan

Susie*Bee
10-07-2014, 05:44 PM
Dear Fifa - I will add my 2 cents worth in case that will help you any. I am fused from T2 - L4 and had my surgery when I was 56, 7.5 years ago. The hospital was a little over 2 hours from where we live, so it was a bit of a situation for my husband as well, since he couldn't take the whole time off from work due to the nature of his job. I was at Rush University Medical Center in Chicago, a top notch teaching hospital, and felt confident in their nursing staff and they did not let me down. My husband stayed with me part of the time, but left and went to work part of the time also. I was fine. I did not want any visitors and I did not use any "devices" or watch any TV. I had brought a book as I'm an avid reader, but there was no way I wanted to read. I was fine just laying there. My daughter and son-in-law did come visit and I do remember exactly the split second look on her face of extreme heartbreak when she first saw me. My face had not gotten swollen, although I had warned my family about that after reading David Wolpert's book Scoliosis Surgery: the Definitive Patient's Reference.. Anyway, some of us do fine without having someone there all the time and without anything to do. I think it depends on the person. As for your other main questions, you should not need anyone to help you with your toileting by the time you leave the hospital. The nursing staff will get you going on that soon enough and the occupational therapist will set you up with a wiping tool if it is absolutely necessary. Gardening? Patience. I will see if I can get a gardener to answer that one -- it took her a couple of years. I think at first you can do raised beds ok, but I think she does regular gardening now. I have a 24' round pool, so that limits real swimming! Surely you will hear from someone. As for pilates, I don't do them, but I'm pretty sure I have read some do them but modified. You will not be twisting and bending. I don't remember how long your fusion will be.

Best wishes for a very successful surgery and a new you! I know there is always anxiety going in and then the recovery time is rough. As Rise said, there is a period of time where you might wonder why you went through this. Everyone heals at different rates. Some of us take awhile to recover. I thought I was "done" at one year, was surprised at how much better I was at two, and continued on with getting better and better each year after that. I still have some limitations as I didn't get fused all the way so I would have just that little bit of extra flexibility, so I am limited to weight I can lift (20-25 lbs. is about it) and I can't bend except from the hip or I might cause my lower vertebrae to have problems. And I'm not supposed to twist. I can manage those limitations. I have a wonderful, busy life. Sure beats the old life! I am super happy with how things turned out. (Big smile!)

walkingmom
10-07-2014, 07:11 PM
Hi Fifa,

I had my surgery at Barnes Hospital in May 2011. I only have positive things to share with you. My husband and daughter were with me during the day, but they stayed at the Parkway Hotel that is adjacent to the hospital. The hotel provided a discounted rate for the families of Barnes patients. He could park in their private garage and never had to worry about parking throughout my one week stay in the hospital. Having wifi available in my hospital room kept them occupied because I was sleeping most of the time.

Because of the heavy medication, I don't remember every detail of my hospital stay. I do recall that when they first moved me to my room on the orthopedic floor, there was an elderly woman in the other bed of the semi-private room. She had a knee replacement done and was agonizing in pain. Her husband was hard of hearing and had the TV blaring. It probably took less than an hour for them to move her to another room and I never had another patient placed with me for the rest of my stay. They are very attentive to those of us who have extensive spinal fusion surgery. The nursing and PT staff were very caring and responsive to everything that I needed. I live about three hours from St. Louis. So when it was time for me to leave, the nurses made sure that I had just been given the proper medication which made for a non-eventful ride home.

Just be sure and try to be patient during the recovery period. It is easy to be frustrated, but you will reap huge benefits if you follow the game plan of walking and no bending, twisting, and limited lifting during that first year. Although I wish that I could have avoided the surgery, I am glad that I had it done rather than waiting for my curvature to progress even more.

Best of luck to you. Be rest assured that you will be taken care of very well at Barnes.

Donna

Susie*Bee
10-07-2014, 09:43 PM
Fifa - Singer is the one who was (is) the gardener, and she didn't readily have her log-in, so I said I'd post for her. (We talked on facebook.) Her surgery was about when mine was, I'm pretty sure (about 7 years ago or so). It took her about two years before she could garden again. She also had a leg problem while she was healing if my memory serves me correctly. She's not as into it anymore so mostly pulls weeds and plants in existing beds, or just lets them go. I know it was a main concern of her right after her surgery and she worked hard to be able to garden once again. She's just moved on. You can always look back at some of her older posts if you want to.

titaniumed
10-07-2014, 10:02 PM
Being in the hospital is about you....not them.
Susan
This is probably some of the best advice on this thread for newbies. And I also want to add that recovery is also about “you”. Its your time to concentrate 100% on your recovery, not worrying about anything or anybody else. Loved ones and inner circle need to know this, they need to know that you are not able to do certain things and pain and meds are unpleasant things. It hurts....but always remember that things always get better, they just do. Always look forward, never back thinking that I shouldn’t have done this or that. Surgery is a time reset, it’s the beginning of a new life with a new spine, no matter how strange things might seem. We will have some pain, numbness, nerve jolts, burning, and general discomfort while doing our recoveries, its something we just have to deal with until we heal.

Most people that have no idea about scoliosis surgery will relate to that one person they know that had a single level fusion or other much smaller orthopedic procedure and think “Uncle Joe was putting a new roof on the house at 3 weeks” After a while a few might wonder why its taking so long for us to come around when they don’t realize that it’s a long long recovery. Adults need more time, my recovery took 2 years, for some its longer......

Surgery is always a scary thing. Especially for kids, but even for us adults. We have no idea what they are going to do, and how its going to come out. One of the questions in my mind was about the bed pan thing.......Man-o-man. I didn’t even ask because I knew that I had to be committed and was going to do it no matter what it took. I never had to use the bed pan, I was NPO, no food by mouth, and if you don’t eat, you don’t poop. I guess that wasn’t even worth worrying about.....Worrying always creates stress, its just time for the horse blinders looking straight ahead just like the horses do....

Swimming can be done....but I’m a diver and started diving for my scoliosis in 1995. Scuba diving is about relaxing and staying calm under water. You are not allowed to panic! Its something we are taught in training, and we learn as we go. I have gone down 100 feet pulled my air out and drank a root beer. (No salt, not a drop!) We take our masks off at anytime at any depth without any worries. Learning how to dive at night is especially freaky as a new diver, now I wont miss a night dive. I will miss a day dive before missing a night dive. I know that this training on how to be relaxed was a benefit as far as my scoliosis surgeries were concerned. Once you do something, once you conquer the unknown, things are easy.


My surgeons and doctors saved my life a few times, not just once!

Tam, thanks for the compliment.....

Ed

LindaRacine
10-07-2014, 11:40 PM
Hi...

I'm another one who didn't want visitors. (Not easy to do when it's your own workplace.) I had my iPhone with me, but don't think I ever used it. I would say it's pretty unusual that one has the ability to read. I don't think I put my contact lenses in until the last day.

I think it's mostly how much medication you're getting, and your reaction to medication.

If you don't have someone staying with you, I wouldn't bring a lot of expensive electronics. You most likely won't be aware enough to really keep track of them. I think most hospitals have no place to lock up your valuables, and there's no guarantee that they won't disappear.

--Linda

jackieg412
10-08-2014, 07:39 AM
Just another comment on the gardening issue. Just like all passions it is in our blood to play in the dirt. It is near impossible at the first year to get in position to do anything needed on the ground but that does get a little better. I tried one of those rolling carts but I couldn't reach the ground. Now I get down on all fours but I can't stay like that so I get up and down. It takes longer but I get things done. Also I avoid anything too heavy. I do a lot of plants in pots ans have a work station built to my proper height. It truly helps. Even though it has been years since my major surgery I still work at the gardening a little at a time. But I get it all done somehow. When I work I change position frequently. You will get there in time.

leahdragonfly
10-08-2014, 08:14 AM
I am also one who did not want a lot of visitors in the hospital. My husband would come and go through the day, I was happy to have him there, and he would walk with me, but I know I was asleep most of the time he was there. The hospital can get lonely when you start to feel more awake, so maybe have your visitors come and take your short walks with you in the hallways. Some people just don't do well as hospital visitors, so take your cues from your family as well. I had one friend come by, she had had a huge scoliosis surgery the year before, but I know I was only awake for about 5-10 minutes with her, although I was really glad she came by. Another work friend asked to come by but I really did not feel up to it at that point. Have your visitors hold off and see you at home after a couple of weeks.

Also, I recently found out from another work friend that I texted him a really bad picture of myself in the bathroom on post-op day 2. I looked like hell with lots of IV pumps, etc. I have thought all this time I sent him a different photo, one of me sleeping with a barf bucket on my head! So that is how I learned that people on dilaudid and heavy narcotics should not text hahaha!

Word to the wise, DO NOT leave the hospital until your family has your actual pain meds in hand, not just the prescriptions. This happened to me, and our local Safeway refused to fill them due to the huge quantities. They told my husband he should take the scripts back to Portland (2 hr drive) to be filled if you can imagine that. I almost went into shock from extreme pain and uncontrollable shaking with no meds at home. I called the Safeway pharmacist and gave him an earful while crying hysterically and then he agreed to fill it. Not a pleasant experience…don't let it happen to you!

tae_tap
10-08-2014, 11:22 AM
Also, I recently found out from another work friend that I texted him a really bad picture of myself in the bathroom on post-op day 2. I looked like hell with lots of IV pumps, etc. I have thought all this time I sent him a different photo, one of me sleeping with a barf bucket on my head! So that is how I learned that people on dilaudid and heavy narcotics should not text hahaha!

!

Oh my goodness! I was reading this at work and began to laugh out loud which brought the concern of my boss (who is a doctor). I guess he came to visit on my first op and got an unwanted full moon view that I will never live down. Said I had no care in the world and wouldn't let Lance tie my gown.

Tamena

jackieg412
10-08-2014, 01:08 PM
It is amazing that modesty goes right out the window when you are in that much pain. My daughter brought a friend with her[male) and I kept moving the covers and she kept covering me up. I just didn't care. In my first hospital stay for the big surgery my pain was not controlled well. My doctor had a colleague check on me over the weekend and he messed everything up. While he was a spine Dr I don't think he had a clue of how much a total spine fusion really is more major then a single level. My doctor straightened things out on Monday when he came back.

titaniumed
10-08-2014, 10:12 PM
With all the hoses they had in me and the open back gown, and a little wind, I pretty sure there was some flash happening in the hallway....a little low speed trolling you might say...

Now, with some of the young energetic male nursing assistants running around these days, guys need flame retardant for survival!

“Calm down Bucko, I’m going to make it back to my room just fine.” “Don’t make me crack you over the head with my walker”.

(Scoliosis forum humor)

Gayle is right, my surgeon and the people at the hospital questioned me a few times verifying that my meds were at home. Written orders stated that I was NOT to bring my meds to the hospital, get them a few days before surgery, and leave them at home. Gayle, you must be tough! I would have died.

Another thing about prescriptions, if you buy them online, and forget about shipping time and run out before the meds arrive, your in trouble. Go to Emergency. This happened to my neighbor on Paxil, it was a complete meltdown. Antidepressant withdrawal is supposed to be one of the worst.

Boy, this thread is covering all the bases....

Ed

jackieg412
10-09-2014, 07:44 AM
Yes ed and while covering all bases we are talking about being uncovered ourselves!

PeggyS
10-10-2014, 07:21 AM
Uh-oh, I hadn't thought too much about flashing. I've been more concerned about my very off-key singing, as I listen to my iPod. Hmmm . . . Maybe that won't be so terrible!

fifa
10-16-2014, 10:56 PM
Hi FIFA! Welcome to the forum. I too had surgery in COMO and St. Louis. I live a couple hours from COMO and actually travel that direction 1-3 times a week.

The hotel connected to Barnes is great. Makes getting around easy and the staff is personable. I didn't have my husband stay in the room over night but he was there till late which is good because they really help with the pain control when you are unable to really address it. He knew the signs of me squeezing my thumbs when it got unbearable (which I didn't realize I did) and was able to address the situation.

Good luck! You will be in good hand.

Tamena


Hi, Tamena!

I'm sorry I didn't respond sooner. Really been going through it the last couple of weeks. I saw on the forum that you had had surgery here in CoMo - I had a different surgeon. LOL I work at the U here and have technically for 16 years - did another 9 years at CRH before the U bought it. I'm glad to know about your positive experience with the hotel. They have been very nice to us by phone. We'll be checking it out when I go for my myelogram next week, which honestly, I'm dreading nearly as much as I'm dreading the surgery itself. The nurse tells me (and it is in my paperwork, too!) that "myelograms have changed so much in the last ten years." Well, it's been ten years since I've had one, so I pray this is true. My lumbar spine is so jacked up that they can't get a steroid injection in without a tremendous amount of pain (the last one of those was maybe four years ago). My last myelogram was about 10-11 years ago and I got the spinal headache, the blood patch, and everything else. I swore I would never have another one and was really unhappy that Dr. B needed this. Thought I might "med up" before the procedure, but then I read that I'm not supposed to do that, either, because it might interfere with the dye! Girl just can't catch a break these days. LOL

Your tap-dancing pics give me hope and I'm glad you've shared them. Thank you for responding to me. I'll try to do better with my responses in the future. I figure you all know what I'm going through right now and you understand. Thanks again - hope you are well.

Fifa

fifa
10-16-2014, 11:15 PM
Hi Fifa,

I am fused T6 to Sacrum and I don't have many limitations. I don't need any toilet aid, I can swim and I do it every weekend, but I only do breast stroke. Any other type of swimming is not comfortable for me, just feels odd. But I was swimming using breast stroke only even before the surgery, so may be that's just my habit.

I never gardened, so can't comment on that, but think I would be able to do it if I wanted to. I quit doing yoga. My surgeon told me that I can do yoga, but modified. Honestly, if I wanted to go to my old yoga class, I'd have to modify A LOT and it would not worth it. I won't be able to do much. But I am not heart broken about it. There are many other things that I can do now and could not do before the surgery. Like standing and walking for as long as I want. Before, all I could stomach was 5 min of standing and I needed to sit down. After half-an-hour of walking my lower back was hurting. Now I can stand in the kitchen and cook without any pain, go to museums and cocktail parties and enjoy myself, travel and walk for hours and hours until my feet (not back!) get tired. We are going to Maui for Thanksgiving and I booked a sunrise tour to Haleakala (a dormant volcano) on a windy and bumpy road and a helicopter tour over west Maui and Molokai because I feel confident in my ability to handle bumpy roads and getting in and out of a helicopter.

So, am I sad about not being able to do yoga? No!

I had my surgery at UCSF and my family was with me most of the time. I was very lucky to have them there. But some people here did it solo. You need to prepare your husband and family to what is coming because people generally don't understand full implications of the early recovery. Educate them. They need to be ready mentally too.

Good luck to you!

Hi, Irina -

Thank you for this reply - I appreciate it. I agree about needing to prepare people and have done that as best as I can with those closest to me. As someone else on this forum mentioned, when you tell people you are going to have back surgery, their response is that they have a herniated disk or know someone with back trouble and you'll be just fine!!! I had been trying to explain that this was different, but I've sort of stopped trying. I just tell them that this is a seven or eight hour surgery, so it's probably a little different than what they had. LOL

I'm leaning toward flying solo as much as possible. There are things my husband doesn't need to see. I have asked him, though, to kindly take a picture of my face as soon as he can postop. He has reluctantly agreed. It is hard for me when people talk about things that happened that I can't remember - that is probably weird. I just want to know.

My parents are in their late 70s/early 80s, and the drive and all the stress won't be good for them, so I haven't told them when I'm going. They just know surgery is scheduled for November and I'll have hubby keep them up to date after it is over. They just decided to move from their home of 30+ years into an apartment, so thankfully, they will be busy and will have enough to worry about. My best girlfriend, who also is my lawyer, will be spending some time with me. She and hubby will work that out. Maybe some of you can relate - I only want positive people around me, the people who won't judge me or put all of my daily progress/transgressions on their Facebook pages! LOL I have lots of friends and lots of family, but very few people I would trust with my life, and these two people are the best people I know! A lot of my friends/family just LOVE the drama, and I can't take it. I want a stress-free recovery zone so I can focus on my own needs and not have any pessimists around.

I guess if I can't garden, it won't be the end of the world, but I'm pretty upset about the yoga because it had been such a huge part of my life up until the last couple of years. I still do it, but I'm very limited (can't do any standing poses at all). The meditation and the breathing has truly been a lifesaver. I guess I will find a way down the road, but it has just been one of those things that has haunted me since two years ago when Dr. B told me how extensive the surgery would be. It sounds stupid when I write this, but it is true. You are right - postop, I'll focus on being able to stand and walk (perchance to run) and let go of those things I can no longer do. I've told people here that my mindset hasn't been right until lately - I have been grieving the things I would lose rather than being grateful for what I had. I'm still struggling some days, but I'm getting there.

Thanks again for your response. I hope you are well! If you have any other suggestions or advice, I would be very happy to hear!

Take care,
Fifa

fifa
10-16-2014, 11:30 PM
I've been concerned about the amount of time I'll need my husband at the hospital, too. He has mobility issues left over from all of his surgeries. I'm hoping to go to rehab for a week, but it sounds like it's difficult to qualify. I'm supposed to stay in St. Louis til my 1st check up - 4 weeks post-op.

The myleogram was stressful because the dr & tech spent a lot of time discussing where to put the needle! I didn't develop a headache - thank goodness b/c I was all over the campus for tests.

I'm so glad to know someone else has the same doctor! Good luck.

Hi again, Peggy!

I'm glad your myelogram went well and that you didn't get the headache. I asked and asked about that - about how they could do a myelogram plus all the preop/postop stuff all in the same day! The last one I had, I sat in a recliner for an hour after the procedure and drank as much caffeine as I could drink. I went home and stayed flat on their orders. The headache started that night. It took two days before they did the blood patch, which also was terrible. Like you, they always have a hard time deciding where to put the needle.

We were told initially two years ago that I would be in the hospital for a week to ten days and then two weeks in (probably) outpatient rehab, so to plan to spend three weeks in St. Louis. At our last visit, I was told they would try to discharge me on Friday (surgery is on a Monday) and that I could spend the weekend at the hotel if I was insecure about going home. Having worked in a hospital as long as I have, I know they typically don't discharge on weekends, especially when home health and stuff like that needs to be arranged. I was surprised that someone could have such extensive surgery on a Monday and get booted on a Friday, but that is what I'm being told. I spoke with Megan on Tuesday this week, and she said they would discharge on a weekend only if things were already set up, and that my discharge was largely based on my level of pain control and a few other things (eating/eliminating/activities of daily living). If I'm up to it, I'll not go to the hotel at all and just come home. I can see all three hospitals in Columbia from my deck, albeit in the distance, so I will opt to come home ASAP and if I have problems, I'll go to one of the ERs here. My insurance won't pay for inpatient rehab.

When you say you were all over campus, did you have to do a lot of walking? That is going to be hard for me. I'm sure they have wheelchairs available. I'll probably need one if there is a lot of walking involved. I can only stand for five or six minutes at a time. I just had pulmonary functions done on Tuesday. One test was within normal limits but the other two (or three) came back abnormal. The tech wasn't supposed to tell me anything, but she did say there was nothing that would preclude me from having surgery, so that is good news. However, I know that my right lung is really restricted since the ribs have moved so much. I gasp just trying to get from the couch to the bathroom and get short of breath very easily. My abdominals are the only thing holding me upright, so I kind of hold my breath while I'm on my feet, which doesn't help matters much. We'll get the formal results back soon, but I know they won't be great. I have a stress test on Monday, then the myelogram on Wednesday. I'm also going to the dentist for an early cleaning. Need a haircut and then I think I'll be ready. Had mammograms today - standing for those darn near killed me.

Will talk to you more later. I'm trying to catch up from not having posted for over a week and am trying to answer everyone. :) I'm glad you are going to stay at the hotel for a month. That's just smart! We'll be checking it out on Wednesday.

Sending all prayers and many hugs to you!

Fifa

fifa
10-16-2014, 11:49 PM
It's been a very stressful time not just for me, but for my husband. Did you have a support system at home? Did folks stay with you while you were in the hospital?

My biggest concerns right now are, in order...
1. Do I really need someone to be with me 24/7 at the hospital? This is going to be really hard on my husband mentally and logistically. I worry.
2. How limited will I be after surgery long term? Will I be able to toilet without aid? Can I garden? Can I do yoga? Can I swim?

There are other concerns, but right now, I'm most worried about my family. My job is secure, my house and office are prepared and ready, and mentally, I'm almost ready. I think there are things in the first couple of days postop that hubby doesn't need to experience, and I'm trying to spare him that, but also am scared to be alone. Hope that makes sense. That's my biggest problem right now. I'm tempted to try to tough it out alone - I mean, there will be nurses, right???? LOL I was going to hire a private nurse to be bedside, but the doc says that's overkill.

Hi Fifa,

I had surgery about 12 weeks ago at HSS (T9-sacrum) and I shared many of your fears/concerns. Immediately post op I was in PACU where visiting hours are quite limited and thankfully they manage your pain beautifully. While I remember being extremely. "Out of it" I was very cognizant of when my husband and sister were with me. Seeing me immediately after surgery was upsetting to both of them. My face was extremely swollen from the 6 hours I spent face down on the operating table. The swelling took about 2 days to go away.

From PACU I went to a step down unit for another 24 hours. My husband stayed with me most of the time until visitng hours were over. No need for private nurses in either PACU or step down. Then it was off to a regular room. Again, no need for a private nurse but having my husband there to watch out for me and comfort me was invaluable.

As far as how I was after surgery I truthfully questioned my decision on and off for the first three wweks or so. The pain killers make you a bit nuts and the fear if breaking something for me was big. I would say after week 5 I felt much more in control, stronger mentally and physically and was off all plain meds.

If you can't do a lot of exercise before surgery I really recommend at least working on your legs. Having strong legs will make life during recovery sooooooo much easier.

I may not be the best person to tell you what you can and can't do because I am likely doing way too much and am praying I don't wind up paying for it later. Assuming there are no big surprises down the road for me the surgery was the lesser of two evils. No doubt my future was not going to be an easy one if I did nothing. It sounds like you're in a similar spot.

Best of luck to you.

Risë


Hi, Rise!

Thanks for your reply! I have been trying to work on my legs, but it is hard (don't have to tell you that - LOL). I'm doing squats at the kitchen sink for maybe three or four minutes as many times per day as I can (not as many as I would like). Yes, I'm in a very similar spot to yours. Glad to hear you are doing well! I'm anxious for an update.

I know the outcome is going to be worth it, but for the past week or so, I've been getting hit with a lot of unexpected stuff. I'm kind of a control freak, and the fear of the unknown has been overwhelming at times. I know you and everyone else here can relate. I have had a really tiny back surgery 30 years ago, but I remember that recovery quite well and know this one will be longer and more painful. My husband is wonderful and quite soft-hearted...he can't stand to see anyone suffer, especially his family. I'm trying to spare him that but I want him with me desperately. So, I've been kind of walking a tightrope. My bestie is going to come with me, too, so they can trade off and he can take a break when things get ugly. Just having this plan in place has helped quite a lot. I was going to go solo. Really want to be able to cry when I want, holler, flash the nurses, etc. I know it will all work out.

How is your pain level now? Are you at a stage at 12 weeks where you are glad you had the surgery? I had a phone call with my doctor's assistant this week. She told me "you're going to hate us when you wake up, and you're going to still be hating us weeks later." She is really wonderful to talk to and very honest. We laughed on the phone and I cried a little, too, especially when she told me how much the BMP would cost. She also dropped another bombshell - she said the doctor would recommend that I be off work for three months. I only have enough paid time off for two months, and I've worked really hard building up comp time to cover an extra week. So, this week has been really stressful with all the appointments, trying to work and make up the time that I've missed (rather than use vacation/sick) from all the appointments. I told the assistant that it is really a LOT to get prepared for this, and she agreed. Some days it is more than I think I can bear.

I'm not looking forward to surgery (or recovery), but I am looking forward to getting it over with and just moving forward. All this prep is sucking the life out of me some days.

Please let me know how you are doing if you can. I'll go looking for your thread as soon as I can. I've been coming home at night this week just completely exhausted.

Take care of yourself!! I'm sending prayers and hugs your way!
Fifa

fifa
10-17-2014, 12:10 AM
Well thanks! I never know if I’m crashing and burning on the comedic effort.....Usually no replies means its pretty good.

After watching the Shawshank Redemption recently, at the end Andy and Red mention the words “Get busy living or get busy dying”.
http://www.youtube.com/watch?v=BLXOcyDQKtc

It was something that kind of hit home with my decision at the end....The risk had to happen no matter what and yes, I also made it to Zihuatanejo.....

I didn’t want anyone showing up at the hospital while I was in intensive care. My surgeon kept me out because he told me the pain would be a 10 with all the work I was having done with the anterior and all....but people came anyway and I never knew they showed up because the lights were on but nobody was home. I think that was the ketamine..... I lost around 5 days of mental retention. I wonder if that’s what dementia is like? I was on the strongest meds they had and was knocked out every 4 hours for 9 days. This isn’t the norm as far as immediate recoveries is concerned, since I have followed many others testimonials. Some of the younger folks are texting hours later. I couldn’t even find my phone for days or work it because my shoulder and arm were also broken (shattered humeral head) from a bad ski crash 10 days before my spine surgeries. I would be lying if I said it didn’t hurt.

People are different as far as support is concerned. I am single and well, I did have some issues with the pain and all that scoliosis has to offer, a sort of 38 yr pinnacle arose after a few days when the brain started working again. I was very upset and pretty mad. Not mad at anybody......just mad as hell. Maybe I was justified after holding it all in over the years, but there was this graveyard nurse that straightened me out with a little bit of counseling on her part. The strong meds triggered the “why” question once again. It had been many years since I re-visited that era of my teenage years. Holding it in? or whatever. I don’t know. The males of the forums don’t openly talk about these sorts of things on the scoliosis forums. I kinda like to lick my wounds privately.....

You feel tall and stiff when you first stand up....I grew 4 inches and the people that were slightly taller than me where now looking up at me. It was actually a riot seeing their faces....he he. There should be no bending, no lifting and no twisting for awhile. Was I going to take that chance? No way Jose, I was a good boy! I didn’t lift more than a dinner plate for 5 or 6 months. And walked on eggshells for a long time. All movements were done slowly and carefully during the immediate fusing period of 8 months.

Can I garden? I don’t, but many here have reported that they are now pulling weeds. I think this is at the 9 month mark. I think this one was a Lenke study! LMAO. You would think it would be depressing for a surgeon to ask a patient and have them come back cheerfully saying that they were now pulling weeds with their million dollar spines......(smiley face)

Congrats on quitting smoking. It’s a no-no for spine patients, inhibits the fusion process from the constriction of the vessels. Blood flow is pretty important in this whole thing, and bone bleeds....so walking stimulates this whole action, and keeps the guts moving while on opoids during your recovery. It also helps prevent DVT which is bad, bad, bad. I would practice your squats. I did this at the kitchen counter. Up and down, work up to a hundred a day. And diet does work! I used a gall bladder diet and lost 9# month and I wasn’t trying to lose weight. I wouldn’t have made it without the bean soup. Soup is good food.

On the subject of meds. They will give you injectable or IV meds if needed for pain and they do work well, no doubt. The main thing is that you want to be weaned to orals before leaving the hospital. I kind of left early and had to wean home alone and that was tough and couldn’t sleep. You cant sleep when you are in pain.

Ed


Hi, Ed!

Well, your humor must have been great because I haven't posted a reply in over a week! HAHAHAHA

I'm with you. Most days, I just want to disappear to St. Louis and take a cab home when it is all over. I'm happily married, but just prefer to suffer in private. When I had my first back surgery, I heard stories from visitors about my mental state when I woke up from anesthesia and how "crazy" I was on the IV meds. Why people think they need to share this information is beyond me - it's not like I could control myself. I think I was shamed enough at prior surgeries by the same people that this is why I prefer to be alone. Thankfully, I have some great folks in my life who don't judge - they will be bedside. The shamers don't know when I'm scheduled. LOL I've asked for a private room (which costs an extra $88 per day) so I can hopefully just be left alone. The physician's assistant who called me this week said she would put me on the list as no one can spend the night with me (if I need it) if I have a roommate. Private rooms are first come, first served, so they may not have one available, but at least I'm on a list. LOL My mind goes back to high school and being told "that will go on your permanent record!" LOL

Sounds like your surgery was planned and then you had an accident before that, too? Good lord. Now your skiing vid is even more meaningful! I'm impressed.

I guess if I have to hire someone to pull weeds, that won't be the end of the world. Maybe I'll just be one of those women who put pansies in pots and call themselves gardeners (no offense to anyone here who does that, okay?? especially postop scoli surgery!!) You have to understand that I've gardened for my whole life, and when I mean garden, I mean clearing property with a chainsaw, building retaining walls out of rock, hauling mulch and who knows how many tons of dirt and compost, one Miracle-Gro bag at a time! I haven't had problems over the years lifting 40-pound bags of whatever I needed to lift...dirt...birdseed...whatever. So, this is going to be a little different for me from here on out. It's not like I can do those things right now anyway, so I guess if I have to give them up, I will. I'm not going to do ANYTHING to risk blowing this surgery. I sure as heck don't want to have a second one!

You and a couple of other people here have recommended strengthening the legs and I am trying. Don't need to tell anyone here how hard it is when you can't stand up for very long.

I have another question for you specifically if you feel like answering. You say you got angry after surgery, which I quite understand. Were you emotional at all preop? You don't have to answer that if you don't want to, and anyone else reading this, I hope you will chime in. I'm just really kind of running the gamut of emotions right now, and frankly, I think I'm just exhausted. I've been trying to work extra hours, and about three to four hours into my shift, I'm near tears and just want to come home. I wish I could just take a couple of weeks off preop and just focus on me (something I never do). I told my bosses a couple of days ago that I just really don't feel well, which shouldn't be a big shock to anyone. I try really hard to keep things to myself, but the pain is so bad lately that I really can't hide it anymore, and trying to hide it is just exhausting.

Why is it that people like me (us) need a seven or eight hour surgical intervention, but I have yet to obtain any meds???? No one has prescribed anything for me. I'm going to ask next week when I see the doctor. Motrin just isn't getting it done these days.

Take care, Ed, and write more when you can! Sorry it has taken so long for me to respond. It's been a bit of a week!

Thanks for your great advice!
Fifa

fifa
10-17-2014, 12:29 AM
Hi Fifa, we all welcome you. It took me several years to post here but I too had followed the forum for awhile. At first you will not want anyone there but I found out ,the hard way that you need someone to watch out for you. As Ed said it is a rough journey at first. I too had a t-10 to pelvis fusion I my first surgery but fractured through t-9 on the sixth day after surgery. I am an avid gardener with my million dollar spine. But I did not do much for the first year. Then I charged everything and avoid getting to the ground as much as possible. I had large planter boxes built. It has been 5 years since my surgery but I still have a limited amount of time I can stay down on the ground. So you learn to modify and get the job done.

Hi, Jackie -

Thanks for your reply! It was very helpful. I know from lots of hospital experience with friends and relatives that every patient needs an advocate, so I've been scared to go it alone, but I really want to go it alone. I know it will be hard. How did you fracture T-9? Were your bones in good shape preop? I'm 51, so hopefully being at the younger end of this surgery will be in my favor, but you just never know. Glad to hear you can still garden, albeit with modifications. I do really well right now on all fours - I can't do any gardening while standing and haven't been able to dig or do much while standing for many years. Your planter boxes sound wonderful - I hadn't thought of that!

Thanks for the warm welcome! I appreciate your response. Please take care and write when you can. I'll try to post more often than I have been able this last week or so. There is just SO MUCH to do with all the preop stuff, home stuff, work stuff, and other issues. I've been a little overwhelmed of late but starting to snap out of it as surgery nears. I'm sure you've been there, too! LOL

Take care!
Fifa

fifa
10-17-2014, 12:40 AM
I agree...forget the visitors. First of all, I do not remember any of them. If close family members want to visit just to see if you are alive, fine.....then they can leave quickly.
Being in the hospital is about you....not them.
Susan

Hi, Susan -

I couldn't agree with you more! That's exactly what I've been feeling. I try really hard to make things easier for everyone else in my life, and truly haven't asked anyone for much of anything ever. This is the one time that I'm laying down the law and making it "all about me." It is a foreign concept, truly, and I'm uncomfortable with being so rigid but know it is the right thing for me. I just don't want to have to keep a stiff upper lip for anyone this time. There are only two people who know when I'm having surgery - the rest, I've told "November." If I tell my family the date, my husband will be inundated with texts and calls, and frankly, when he's with me, he needs to be focused on me. There isn't anything anyone else can do for me but pray, and I've told them all that. They seem to understand as I have educated all of them about the enormity of this surgery. I cry pretty easily these days (may be hormonal - maybe my estrogen replacement isn't working...HA!), so everyone has stopped pressuring me and I'm grateful for that! Wow, I hope that doesn't make me sound sound like a jerk on the forum!!! LOL

Thanks for replying - I know you may not feel like it, so I really really appreciate it! I'm sending all prayers and hugs to you (gentle hugs). Write back when you get a chance. I've been following your story since it started here and am "e with you." (smilies)

Fifa

fifa
10-17-2014, 12:42 AM
Ed,
I've been wondering how soon I'll want my kindle, phone or iPad -LOL! I feel lost without at least one of them! Sounds like it could be a few days, as I'm not one of the young ones! I know you had much more extensive surgery than most. Your advice, reflections AND sense of humor are so helpful!

Hi, Peggy -

I've been wondering the same thing and have decided not to take anything but my phone so I can communicate with my husband when he isn't with me. I bet those buttons get a whole lot tinier when you're stoned!!!! LOL I have a tendency to "fat finger" on my phone, so I should be sending some REALLY interesting texts.

Take care!
Fifa

fifa
10-17-2014, 12:56 AM
Dear Fifa - I will add my 2 cents worth in case that will help you any. I am fused from T2 - L4 and had my surgery when I was 56, 7.5 years ago. The hospital was a little over 2 hours from where we live, so it was a bit of a situation for my husband as well, since he couldn't take the whole time off from work due to the nature of his job. I was at Rush University Medical Center in Chicago, a top notch teaching hospital, and felt confident in their nursing staff and they did not let me down. My husband stayed with me part of the time, but left and went to work part of the time also. I was fine. I did not want any visitors and I did not use any "devices" or watch any TV. I had brought a book as I'm an avid reader, but there was no way I wanted to read. I was fine just laying there. My daughter and son-in-law did come visit and I do remember exactly the split second look on her face of extreme heartbreak when she first saw me. My face had not gotten swollen, although I had warned my family about that after reading David Wolpert's book Scoliosis Surgery: the Definitive Patient's Reference.. Anyway, some of us do fine without having someone there all the time and without anything to do. I think it depends on the person. As for your other main questions, you should not need anyone to help you with your toileting by the time you leave the hospital. The nursing staff will get you going on that soon enough and the occupational therapist will set you up with a wiping tool if it is absolutely necessary. Gardening? Patience. I will see if I can get a gardener to answer that one -- it took her a couple of years. I think at first you can do raised beds ok, but I think she does regular gardening now. I have a 24' round pool, so that limits real swimming! Surely you will hear from someone. As for pilates, I don't do them, but I'm pretty sure I have read some do them but modified. You will not be twisting and bending. I don't remember how long your fusion will be.

Best wishes for a very successful surgery and a new you! I know there is always anxiety going in and then the recovery time is rough. As Rise said, there is a period of time where you might wonder why you went through this. Everyone heals at different rates. Some of us take awhile to recover. I thought I was "done" at one year, was surprised at how much better I was at two, and continued on with getting better and better each year after that. I still have some limitations as I didn't get fused all the way so I would have just that little bit of extra flexibility, so I am limited to weight I can lift (20-25 lbs. is about it) and I can't bend except from the hip or I might cause my lower vertebrae to have problems. And I'm not supposed to twist. I can manage those limitations. I have a wonderful, busy life. Sure beats the old life! I am super happy with how things turned out. (Big smile!)

Miss Susie Bee, you are an inspiration and I thank you for your reply!!!

I'm having a lot of mixed feelings going in, but now they mostly have to do with having so much to do and not enough time to do it. My problem is that I'm trying to "fix" everything I can think of before I go in, and I'm quickly realizing that this will not be possible. I've been working lots of extra hours trying to save up time that I may need, plus all the preop stuff, plus a small family issue (my 80 year old parents have decided to move from their home of 30 years and they live an hour away from me). What I really want to do right now is just relax and start letting go of things. I'm ready to rest and just heal, and am looking forward to that. I'm mostly looking forward to not being as disabled as I am currently. Getting the handicap tag earlier this year just really was a mind blower - having to think of yourself as "disabled" and especially telling other people I needed the tag to begin with was really hard for me. I've never thought of myself as disabled, but I truly can't walk very far without huffing and puffing (right lung is restricted from the rib movement) and my gosh, the PAIN. Having constant pain is simply exhausting. Sorry - I'm sure I don't need to tell anyone HERE about the PAIN! LOL

I'm hearing a common theme about the time period of wondering if you made the right decision. All I know about that is that I can't go on much longer in my current state. If I can get my lung function back and get rid of the rib pain, I'll be pretty happy. The rest of it (getting back the three inches I've lost, being able to walk and stand, etc.) will just be the icing on the cake. Any kind of cosmetic result (lack of rib hump) would be the ice cream on top of the icing on the cake! LOL

I'm not taking any devices, books, or anything else to the hospital except for my phone, and will only use that (if I'm able) to text hubby so he doesn't have to drive for a couple of hours just to find out how I'm doing. If I can text him and tell him I'm fine and he doesn't need to be there, that would be great. Truly, with all the stress leading up to surgery, I think I'll be very happy to just try to rest and be drugged up.

Hope I'm not being naive, but if so, I know you all will set me straight (please do!!)

Thanks for responding. I hope you are doing well!
Fifa

fifa
10-17-2014, 01:09 AM
Hi Fifa,

I had my surgery at Barnes Hospital in May 2011. I only have positive things to share with you. My husband and daughter were with me during the day, but they stayed at the Parkway Hotel that is adjacent to the hospital. The hotel provided a discounted rate for the families of Barnes patients. He could park in their private garage and never had to worry about parking throughout my one week stay in the hospital. Having wifi available in my hospital room kept them occupied because I was sleeping most of the time.

Because of the heavy medication, I don't remember every detail of my hospital stay. I do recall that when they first moved me to my room on the orthopedic floor, there was an elderly woman in the other bed of the semi-private room. She had a knee replacement done and was agonizing in pain. Her husband was hard of hearing and had the TV blaring. It probably took less than an hour for them to move her to another room and I never had another patient placed with me for the rest of my stay. They are very attentive to those of us who have extensive spinal fusion surgery. The nursing and PT staff were very caring and responsive to everything that I needed. I live about three hours from St. Louis. So when it was time for me to leave, the nurses made sure that I had just been given the proper medication which made for a non-eventful ride home.

Just be sure and try to be patient during the recovery period. It is easy to be frustrated, but you will reap huge benefits if you follow the game plan of walking and no bending, twisting, and limited lifting during that first year. Although I wish that I could have avoided the surgery, I am glad that I had it done rather than waiting for my curvature to progress even more.

Best of luck to you. Be rest assured that you will be taken care of very well at Barnes.

Donna


Hi, Donna!

I'm very happy to hear your positive reviews of Barnes. Thank you! I've heard nothing but good things about the care there. I was talking to Dr. B's assistant, Megan, and she told me that the nurses there only work in orthopedics and are extremely familiar with the needs of scoliosis patients. That made me very happy. I've been in several hospitals where they pull nurses from other floors, which isn't the best practice in my opinion. Nothing like a nurse yanking on your legs to try to "help" you get up out of bed postop!!! LOL

For a whopping (sarcasm) $88 per day, I can have a private room if I luck out and they have some available when I'm moved out of the ICU. Megan has put me on the list. The private room hopefully will solve a lot of my concerns. Frankly, I couldn't believe that Barnes still had two patients per room. The three hospitals here have all switched to private rooms - maybe for infection control or other Affordable Care Act reasons....???? I'm getting my flu shot tomorrow. Also, Megan said no one could spend the night with me (if I need it) while I have a roommate. Since my husband will be commuting back and forth and we never know about Missouri weather, I would prefer that he be able to stay with me if he needs to. Lastly, I really don't want to have to worry about my bare butt, noises, smells, etc., with a roommate (and his/her bare butt, noises, and smells). LOL If I have to share a room, it won't be the end of the world, but I'm happy to pay the extra money. It's cheaper than the hotel!

I had taken the advice of many on the forum and I asked Megan about my discharge meds. She assured me that I would have my scripts filled before I left the hospital. Many people here have reported that pharmacies don't want to fill (or can't fill) the large quantities prescribed.

We will definitely be following the game plan of walking and no bending/lifting/twisting. If you (or anyone else) has any ideas about the "perfect" vehicle for the ride home, I would love to hear it! Glad to know yours was uneventful. I have a Toyota RAV-4, which is how I'll get home. Hubby prefers to drive his car, but I think it is too low to the ground for me and I probably can't get in or out of it easily. I already have a hard time in my current condition (he has a Nisaan Sentra).

Again, thanks for your reply. If you think of anything else, I would be grateful to hear it! Take care!
Fifa

fifa
10-17-2014, 01:11 AM
Fifa - Singer is the one who was (is) the gardener, and she didn't readily have her log-in, so I said I'd post for her. (We talked on facebook.) Her surgery was about when mine was, I'm pretty sure (about 7 years ago or so). It took her about two years before she could garden again. She also had a leg problem while she was healing if my memory serves me correctly. She's not as into it anymore so mostly pulls weeds and plants in existing beds, or just lets them go. I know it was a main concern of her right after her surgery and she worked hard to be able to garden once again. She's just moved on. You can always look back at some of her older posts if you want to.

Thank you for this!! I may have to give it up and am mostly okay with that. Maybe I'll just hire some good-looking shirtless guy to come do the yard work, and I'll lounge in a comfortable chair and watch him! LOL Kind of like having a pool boy, maybe.... ???

Take care!
Fifa

fifa
10-17-2014, 01:20 AM
This is probably some of the best advice on this thread for newbies. And I also want to add that recovery is also about “you”. Its your time to concentrate 100% on your recovery, not worrying about anything or anybody else. Loved ones and inner circle need to know this, they need to know that you are not able to do certain things and pain and meds are unpleasant things. It hurts....but always remember that things always get better, they just do. Always look forward, never back thinking that I shouldn’t have done this or that. Surgery is a time reset, it’s the beginning of a new life with a new spine, no matter how strange things might seem. We will have some pain, numbness, nerve jolts, burning, and general discomfort while doing our recoveries, its something we just have to deal with until we heal.

Most people that have no idea about scoliosis surgery will relate to that one person they know that had a single level fusion or other much smaller orthopedic procedure and think “Uncle Joe was putting a new roof on the house at 3 weeks” After a while a few might wonder why its taking so long for us to come around when they don’t realize that it’s a long long recovery. Adults need more time, my recovery took 2 years, for some its longer......

Surgery is always a scary thing. Especially for kids, but even for us adults. We have no idea what they are going to do, and how its going to come out. One of the questions in my mind was about the bed pan thing.......Man-o-man. I didn’t even ask because I knew that I had to be committed and was going to do it no matter what it took. I never had to use the bed pan, I was NPO, no food by mouth, and if you don’t eat, you don’t poop. I guess that wasn’t even worth worrying about.....Worrying always creates stress, its just time for the horse blinders looking straight ahead just like the horses do....

Swimming can be done....but I’m a diver and started diving for my scoliosis in 1995. Scuba diving is about relaxing and staying calm under water. You are not allowed to panic! Its something we are taught in training, and we learn as we go. I have gone down 100 feet pulled my air out and drank a root beer. (No salt, not a drop!) We take our masks off at anytime at any depth without any worries. Learning how to dive at night is especially freaky as a new diver, now I wont miss a night dive. I will miss a day dive before missing a night dive. I know that this training on how to be relaxed was a benefit as far as my scoliosis surgeries were concerned. Once you do something, once you conquer the unknown, things are easy.


My surgeons and doctors saved my life a few times, not just once!

Tam, thanks for the compliment.....

Ed


Hi, again -

I think Susan is right. That's how I'm looking at it - this is the one time it is all about me. I told my parents and a few relatives that I'm about to "flip the switch." Right now, I'm still in "help everyone else" mode, but pretty quick, I'm going to turn that off like a light switch and make it all about me. They've been warned. LOL Seriously, I sound ungrateful because I have lots of concerned family, and I'm not. I just want them to stay home and pray for me. I have a huge extended family and they all feel it necessary to show their concern by showing up, which is just silly when someone is in the hospital and needs to rest!

So, you're the one who talked about Uncle Joe roofing the house. LOL I'm getting a LOT of that. I'm also getting the "everything is going to be just fine! You'll be up and at 'em in no time." My response is "we'll see." I've had people at work who don't understand I may be away for three months. I hope not, but it is possible and we need to plan for that.

The fear of the unknown is really getting to me sometimes, so I'm glad you mentioned that.

Thanks again, Ed. You've been a huge help to me (everyone has) and I'm grateful!
Fifa

fifa
10-17-2014, 01:26 AM
Hi...

I'm another one who didn't want visitors. (Not easy to do when it's your own workplace.) I had my iPhone with me, but don't think I ever used it. I would say it's pretty unusual that one has the ability to read. I don't think I put my contact lenses in until the last day.

I think it's mostly how much medication you're getting, and your reaction to medication.

If you don't have someone staying with you, I wouldn't bring a lot of expensive electronics. You most likely won't be aware enough to really keep track of them. I think most hospitals have no place to lock up your valuables, and there's no guarantee that they won't disappear.

--Linda


Hi, Linda!

Thanks for your reply. I doubt I'll want to read, play games, or do anything while I'm in the hospital other than rest and maybe watch some television. I'm very glad to be having surgery out of town, especially since I've worked in a hospital for so long. Why does everyone need to stop by when you're sick? I've never understood that. Come bring food when I'm home, or offer to run the vacuum! LOL

All I plan to bring is my phone. Doubt I'll feel much like doing anything while hospitalized.

Take care! You've had a lot of really good advice for folks here, and I appreciate your input!
Fifa

fifa
10-17-2014, 01:28 AM
Just another comment on the gardening issue. Just like all passions it is in our blood to play in the dirt. It is near impossible at the first year to get in position to do anything needed on the ground but that does get a little better. I tried one of those rolling carts but I couldn't reach the ground. Now I get down on all fours but I can't stay like that so I get up and down. It takes longer but I get things done. Also I avoid anything too heavy. I do a lot of plants in pots ans have a work station built to my proper height. It truly helps. Even though it has been years since my major surgery I still work at the gardening a little at a time. But I get it all done somehow. When I work I change position frequently. You will get there in time.

Thanks, Jackie - this is good to know!! I do a lot of digging with a hand trowel - playing in the dirt is my therapy. Hopefully, I'll be able to get back at it soon (but not so soon as to ruin a fusion). LOL

Fifa

fifa
10-17-2014, 01:32 AM
I am also one who did not want a lot of visitors in the hospital. My husband would come and go through the day, I was happy to have him there, and he would walk with me, but I know I was asleep most of the time he was there. The hospital can get lonely when you start to feel more awake, so maybe have your visitors come and take your short walks with you in the hallways. Some people just don't do well as hospital visitors, so take your cues from your family as well. I had one friend come by, she had had a huge scoliosis surgery the year before, but I know I was only awake for about 5-10 minutes with her, although I was really glad she came by. Another work friend asked to come by but I really did not feel up to it at that point. Have your visitors hold off and see you at home after a couple of weeks.

Also, I recently found out from another work friend that I texted him a really bad picture of myself in the bathroom on post-op day 2. I looked like hell with lots of IV pumps, etc. I have thought all this time I sent him a different photo, one of me sleeping with a barf bucket on my head! So that is how I learned that people on dilaudid and heavy narcotics should not text hahaha!

Word to the wise, DO NOT leave the hospital until your family has your actual pain meds in hand, not just the prescriptions. This happened to me, and our local Safeway refused to fill them due to the huge quantities. They told my husband he should take the scripts back to Portland (2 hr drive) to be filled if you can imagine that. I almost went into shock from extreme pain and uncontrollable shaking with no meds at home. I called the Safeway pharmacist and gave him an earful while crying hysterically and then he agreed to fill it. Not a pleasant experience…don't let it happen to you!


Hi, Leah -

This made me laugh out loud! I read this several days ago at work, but I didn't have a chance to respond. That. Is. HILARIOUS!

Thanks to you and a couple of others, I asked the physician assistant about getting the pain meds before we leave the hospital, and she assured me that they would take care of that. So, thank you! I'm also going to ask for a shot or something for the ride home. It will be the one time I can relax while someone else is driving. LOL

I hope you and everyone else will share their funny stories with me. The humor really helps!

Take care - hope you are doing great!
Fifa

fifa
10-17-2014, 01:36 AM
Oh my goodness! I was reading this at work and began to laugh out loud which brought the concern of my boss (who is a doctor). I guess he came to visit on my first op and got an unwanted full moon view that I will never live down. Said I had no care in the world and wouldn't let Lance tie my gown.

Tamena

LOL Tamena - that is so excellent! Thank you!

Fifa

fifa
10-17-2014, 01:41 AM
It is amazing that modesty goes right out the window when you are in that much pain. My daughter brought a friend with her[male) and I kept moving the covers and she kept covering me up. I just didn't care. In my first hospital stay for the big surgery my pain was not controlled well. My doctor had a colleague check on me over the weekend and he messed everything up. While he was a spine Dr I don't think he had a clue of how much a total spine fusion really is more major then a single level. My doctor straightened things out on Monday when he came back.

I remember my first trip to the toilet after my tiny back surgery in 1987 - they left me in there alone and I passed out cold! I had been working as a secretary in a plant that had pipes with ammonia in them, and I remember thinking - "OMG - there's an ammonia leak in the plant and we need to get out of here." The ammonia smell was the nurse waving smelling salts under my nose to wake me up from having passed out! LOL

Fifa

PeggyS
10-17-2014, 06:15 AM
I didn't know about requesting a private hospital room. I need to call Megan, TODAY! Heck, I'm paying out-of-pocket for BMP, what's $88 for a private room going to matter! LOL - sadly!

susancook
10-18-2014, 04:00 PM
Pardon my repetition if I have said this before!

Visitors: just very close family that you like. Said before: it's all about you. I do not remember any visitors except my husband and daughter, both of who spent the night with me. I made a comment to My husband: "why didn't you spend more than one night with me?" He answered, "I was there 4 nights". I had no idea!

Might be a good idea for someone to wrote down who sends flowers and take a cell phone picture of he flowers. I do not remember having flowers although relatives told me that I did. So, I did not even thank the sender!

Private Room: I highly recommend. Many hospitals will not allow someone to spend the night if you do not have a private room. If you can guarantee that a roommate: has no pain, does not order strong smelling food when you are nauseated, does not have TV on when you want to sleep, sleeps 8 hours, does not say a word or play loud music, does not snore, does not have obnoxious visitors, goes to bed when you do, does not fart, does not cover up the window in the room....just easier to have a private room.

Susan

fifa
10-18-2014, 10:51 PM
I didn't know about requesting a private hospital room. I need to call Megan, TODAY! Heck, I'm paying out-of-pocket for BMP, what's $88 for a private room going to matter! LOL - sadly!

Hi, Peggy -

Yes, I was a little shocked that they have double rooms. Every hospital here has gone to private rooms, and they all have pull-out couches so family can stay bedside. I'm happy to pay the extra. Have shared a hospital room before, and it can be awkward with each other's visitors, television, etc. Hope you get on the list! Megan told me there were no guarantees, but it is worth a shot!

Talk to you soon!
Fifa

fifa
10-18-2014, 10:55 PM
Pardon my repetition if I have said this before!

Visitors: just very close family that you like. Said before: it's all about you. I do not remember any visitors except my husband and daughter, both of who spent the night with me. I made a comment to My husband: "why didn't you spend more than one night with me?" He answered, "I was there 4 nights". I had no idea!

Might be a good idea for someone to wrote down who sends flowers and take a cell phone picture of he flowers. I do not remember having flowers although relatives told me that I did. So, I did not even thank the sender!

Private Room: I highly recommend. Many hospitals will not allow someone to spend the night if you do not have a private room. If you can guarantee that a roommate: has no pain, does not order strong smelling food when you are nauseated, does not have TV on when you want to sleep, sleeps 8 hours, does not say a word or play loud music, does not snore, does not have obnoxious visitors, goes to bed when you do, does not fart, does not cover up the window in the room....just easier to have a private room.

Susan

UGH - Susan, I had forgotten about food smells when nauseated. Yuck. Thanks?? (ha) You're in health care, too - was there something with the Affordable Care Act about private rooms? It seems everything here in town when that direction in the last year or two.

Take care - sending e-hugs and e-prayers!
Fifa

fifa
10-18-2014, 11:00 PM
Hi, all -

I thought I would ask the question I've not seen asked or answered on the forum.

I've been worried about what is referred to as the "wake up test." I'm told that I'll be awakened during surgery and asked to perform some maneuvers with my feet and legs (stepping on the gas, etc.) to make sure everything is still working the way it should. I was told that I won't remember any of this. Do any of you remember this part of your surgery? This scares the crud out of me, mostly because of being intubated and awake, I guess. Were any of you scared about it?

I would love to hear your thoughts and comments.

Thanks!
Fifa

green m&m
10-18-2014, 11:36 PM
Speaking of visitors, I had to make an "allowed to visit" llist and gave it to nursing and security to prevent some cousins from visiting. They haven't been in touch forever and all of sudden wanted to reconnect. Apparently my BP shot up when . found out they wanted to visit while still in special care unit so my best friend, boy friend, my nurse and I thought it'd be best at to make sure there was no chance of anyone unwanted popping in - leading to the somewhat drastic ish list of allowed folks. Helped put my mind at ease.

green m&m
10-19-2014, 12:39 AM
Also, regarding the wake up test. I didn't ask about it/wasn't told I'd have one ( I was on neuro monitor entire time to make sure nothing they were doing was going to result in neurological deficit ).

But I can offer insight on being aware while intubated. I was kept intubated overnight -- I did wake up couple of times, but wasn't scared or concerned about the endotracheal tube in my throat. It didn't cause discomfort.

I remember being annoyed at my nurse that she kept on 'hiding' my hands under the blanket when I tried to point at my lips in hopes of getting some lip balm or even a smear of vasaline because my lips felt dry. LOL. She was afraid I'd extubate myself.

For all we know you may end up being annoyed at that bunch of people are yelling at you to do stuff when you feel sleepy and want to go back to sleep. (Which is what happened first time I got general anesthesia and they were waking me up. I was annoyed as heck bunch of ladies were yelling at me because I wanted to sleep for five more minutes)

JenniferG
10-19-2014, 04:41 AM
I was told I'd be having the wake up test as well. I worried I would be in pain and paralysed. My surgeon told me I wouldn't remember it and I don't. Please don't worry about it. I'm not even sure of the wisdom of telling patients this, because it sounds very scary but it's nothing to worry about. Put it out of your head and give yourself some peace.

PeggyS
10-19-2014, 06:57 AM
Our (Fifa & me) nurse told me to review the 'wake up test' maneuvers & to practice them the day before surgery! What?!?

Great idea, Susan - about takings pics of flowers & noting who they're from. It's hard to imagine how 'out of it' I'll be!

Visitors won't be an issue b/c we're 8 hours from home! Last night, some close friends said they want to visit once I'm in the apartment during our month long stay. I was surprised & left my response as waiting to see how things are going. I know they want to see me, but they'd also like to give Rick some help.

tae_tap
10-19-2014, 06:59 AM
Hi, all -

I thought I would ask the question I've not seen asked or answered on the forum.

I've been worried about what is referred to as the "wake up test." I'm told that I'll be awakened during surgery and asked to perform some maneuvers with my feet and legs (stepping on the gas, etc.) to make sure everything is still working the way it should. I was told that I won't remember any of this. Do any of you remember this part of your surgery? This scares the crud out of me, mostly because of being intubated and awake, I guess. Were any of you scared about it?

I would love to hear your thoughts and comments.

Thanks!
Fifa

Fifa,
Do not worry about the wake up test. You will not remember it during the surgery. The only time I remember is the very last time and I was still so drugged I didn't feel any pain. You just have a ton of people telling you to lift your legs, point your toes, and push on the gas pedal. I was terrified of the test as well, but rest assure it is one of the many things that will not even remain in your memory bank.

Tamena

Irina
10-19-2014, 10:32 AM
I remember somebody telling me to move my legs and then saying: "Good enough", and then I dosed off. But I thought it happened in the recovery room, was it a wake up test in the operating room? Linda, do they do a wake up test at UCSF?

titaniumed
10-19-2014, 10:51 AM
I could imagine the wake up test being quite confusing if you own a Tesla. Its electric and has no gas pedal.....or if one uses a horse. “Doc, if I pull on the reins, will that work?” (smiley face)

There hasn’t been much chatter on the wake up test subject since many surgeons rely on SSEP’s and or various nerve monitoring equipment....I didn’t have a wake up test, but they did wake me after my anterior during my stage looking for permission to continue on the posterior. It was like a dream, “Ed you ok? Can we continue on?” Was I going to say no? In and out with a twist of a valve. I was awake for 10 seconds and of course didn’t feel anything at all.

Ed

Susie*Bee
10-19-2014, 12:03 PM
Yes, I remember the wake up test and it was fine. Don't worry about it. And yes, Ed, I had all the wiring or whatever and there was a neurologist watching everything also. It was just one more thing. Fifa, what I remember is that they woke me up, but I was still sort of in a twilight type zone, and they asked me to wiggle my toes and move my feet, etc., and I remember thinking "good, I'm still here"... (big smile) and then off I went back to sleep. I didn't feel any pain or anything. Don't sweat it.

springchicken
10-21-2014, 06:07 PM
Hi Fifa!
I was reading through your thread and it sounds like everyone has given you so much good advice I probably will just be redundant! But I did want to wish you well so I thought I'd say hi.

I read that you were sad about yoga and I can really relate. Not sure what type you practiced and sorry if you already discussed this, but maybe you could look into Iyengar when you're healed post surgery. It uses a lot of props and emphasizes form and balance.

I miss being able to practice like I did presurgery but I've found I can modify poses and even the gentlest poses bring me a little relief now. Once I get my pain situation under control I hope to keep adding poses.

There is a yoga studio in NY that specializes in yoga for scoliosis and even offers classes for fused folks. So it is possible, just different of course.

Best of luck to you- I will be thinking of you!

PeggyS
10-25-2014, 09:12 AM
Hi Fifa,

Are you ok? You haven't posted for awhile, but I know you're busy & trying to 'wrap your head' around your upcoming surgery. Did the pre-testing go ok? We're on our way!

fifa
10-26-2014, 05:13 PM
Also, regarding the wake up test. I didn't ask about it/wasn't told I'd have one ( I was on neuro monitor entire time to make sure nothing they were doing was going to result in neurological deficit ).

But I can offer insight on being aware while intubated. I was kept intubated overnight -- I did wake up couple of times, but wasn't scared or concerned about the endotracheal tube in my throat. It didn't cause discomfort.

I remember being annoyed at my nurse that she kept on 'hiding' my hands under the blanket when I tried to point at my lips in hopes of getting some lip balm or even a smear of vasaline because my lips felt dry. LOL. She was afraid I'd extubate myself.

For all we know you may end up being annoyed at that bunch of people are yelling at you to do stuff when you feel sleepy and want to go back to sleep. (Which is what happened first time I got general anesthesia and they were waking me up. I was annoyed as heck bunch of ladies were yelling at me because I wanted to sleep for five more minutes)

Hi,

That made me laugh - couldn't they have just handed you a pad and a pen??? Hugs to you - thanks for the info!
Fifa

fifa
10-26-2014, 05:15 PM
I was told I'd be having the wake up test as well. I worried I would be in pain and paralysed. My surgeon told me I wouldn't remember it and I don't. Please don't worry about it. I'm not even sure of the wisdom of telling patients this, because it sounds very scary but it's nothing to worry about. Put it out of your head and give yourself some peace.

Thank you! It has been bothering me since they told us about it two years ago. This past Wednesday, Megan (Dr. B's nurse) said they hardly ever do it anymore because of neural monitoring throughout the procedure, but I should still practice "putting on the gas." (smiley)

Take care!
Fifa

fifa
10-26-2014, 05:18 PM
Yes, I remember the wake up test and it was fine. Don't worry about it. And yes, Ed, I had all the wiring or whatever and there was a neurologist watching everything also. It was just one more thing. Fifa, what I remember is that they woke me up, but I was still sort of in a twilight type zone, and they asked me to wiggle my toes and move my feet, etc., and I remember thinking "good, I'm still here"... (big smile) and then off I went back to sleep. I didn't feel any pain or anything. Don't sweat it.

Thanks, Susie Bee - very helpful! (smiley)

Fifa

fifa
10-26-2014, 05:27 PM
Hi Fifa!
I was reading through your thread and it sounds like everyone has given you so much good advice I probably will just be redundant! But I did want to wish you well so I thought I'd say hi.

I read that you were sad about yoga and I can really relate. Not sure what type you practiced and sorry if you already discussed this, but maybe you could look into Iyengar when you're healed post surgery. It uses a lot of props and emphasizes form and balance.

I miss being able to practice like I did presurgery but I've found I can modify poses and even the gentlest poses bring me a little relief now. Once I get my pain situation under control I hope to keep adding poses.

There is a yoga studio in NY that specializes in yoga for scoliosis and even offers classes for fused folks. So it is possible, just different of course.

Best of luck to you- I will be thinking of you!

Hi!

Thanks for your reply. The yoga I practice is Kripalu. No, I hadn't really discussed it before, but honestly, it has saved my life and I think will be extremely beneficial during the recovery phase. What it taught me was to "push through," so to speak. This is hard to explain and obviously is just my own opinion. Trying to hold a pose, concentrating on the breath and everything you are feeling, and being able to hold that pose for even another millisecond past the point you think you can take no more....well, that was HUGE for me. I realized that when the body starts to fail and everything in your brain tells you to quit, you can find the strength somewhere to carry on, even if just for another minute or two. It is so much deeper than what I'm trying to say here, but you get the drift. LOL Practicing yoga, especially these days just the meditation and being mindful of the breath, has made me more tolerant of my own pain, other people, etc. So, I'll be breathing and "pushing through" in the next weeks and months.

My yoga teacher assures me that, if I want to attend class, there are poses that I can do while others mirror what he is doing. It will be a long time, I think, before I go back to class. I will look into Iyengar - thanks for the tip!

Good luck to you - namaste!
Fifa

fifa
10-26-2014, 05:52 PM
Hi Fifa,

Are you ok? You haven't posted for awhile, but I know you're busy & trying to 'wrap your head' around your upcoming surgery. Did the pre-testing go ok? We're on our way!

Hi, Peg!

This past week has been just an absolute blur. Thankfully, I can report that the preop testing is finally over. YAY! The myelogram went well Wednesday, for which I'm thankful because I had been dreading it SO MUCH!

I'm really not much of a whiner, but Wednesday at Barnes really tried my patience. Myelo was scheduled for 9:30 a.m., and that went great. Virtually pain free. I had the two docs laughing, so that's something. (smiley) After the myelo, the guy came to wheel me up to the third floor to recover. Third floor didn't want me, so after a discussion amongst several people I couldn't see (I was on a gurney facing the wall), they took me back to the second floor. Another discussion/argument ensued, and then I was taken back to the third floor where clearly I wasn't wanted. The nurse told me that I had spent so long in the hall/elevator that I only had about ten more minutes to "recover." I asked if I could have something to drink and maybe a cracker (this is what they do at my hospital), and she said (jokingly) that she wasn't the cafeteria. I appreciated the humor but felt like maybe I wasn't getting the proper post-procedure care. I asked if I should be sitting up and pushing caffeine, and the nurse basically says "whatever works."

Should also mention that the CT tech, when I was wheeled into the CT area, said, "your back, huh? I have a bad back, too, from moving patients around, but I would NEVER have a fusion, not after what I've seen here." Uh, fella - I've worked in a couple of hospitals for most of my adult life, and trust me, no preop patient needs to hear that.

So, after having "recovered" from the myelogram, we reported to "CPAP," which means something totally different to me with my medical background and probably anyone else who has experience with sleep apnea. LOL. That's the name for their patient registration area. Okay, so now it is 12:30 p.m. and they don't have my appointment scheduled. So, they sent us back to Dr. B's office on the 6th floor. They sent us for x-rays, which took an hour, then back to Dr. B's office. They sent us back to CPAP. CPAP says to come back at 2:30 p.m. and they would try to work me in. Dr. B's office said to be there in his office between 3 and 3:30 p.m. (our original appointment was for 3:30 p.m.) or we would miss the doctor (the whole point of the visit). So, we sat in Dr. B's office from 2:45 p.m. until 4:20 p.m. thinking they would see us and then we would head back to CPAP for the rest. We went through all the preop info with Dr. B and Megan in about 20 minutes flat, and then rushed back to CPAP at 4:45 p.m. (they close at 5:00 p.m.) We left Barnes at 6:20 p.m.

Megan has called the house and apologized profusely - not really their fault. Suffice it to say that I was terribly upset - I was in tears when I went to get Megan at around 4:00 p.m. I should also say that we hadn't eaten, had had the crappy experience in radiology, and I just plain didn't feel well after the myelo. Told them all that I had the utmost faith in Dr. B and his team. The visit Wednesday really tried my patience. I'm over it now, but geez, Louise, it was a long day. We left Columbia at 7 a.m. and got home at 9:20 p.m. I was exhausted.

Friday was the stress test, which also went well, but I got pretty nauseated with the drugs. I toughed it out for nearly an hour and then found out they had meds to reverse the effects (rather than recover from them). In less than a minute after getting those drugs, I was better. Spent yesterday laying low - I'm exhausted still.

We were told Wednesday that health care folks are the worst patients, but honestly, I think the experience would have troubled anyone. If anything, I think we were more understanding about the snafu than a non-health-care-worker would have been.

It's been kind of a crappy week here - I'm just ready to get it over with at this point. I envy you that your surgery is tomorrow. Would trade places with you in a heartbeat!!! :) :)

Candles are lit here for you, Peg - please know my prayers and healing energy will be directed to you in the next days and weeks!

Fifa

fifa
10-26-2014, 08:03 PM
Hi, everyone -

It is Sunday night and my thoughts are on my own upcoming surgery, but especially with Peggy tonight as she starts her journey bright and early tomorrow morning. Prayers going up and East! (big smiles)

Thank you all for your posts and for sharing your journeys with me. This is a huge decision and one I'm not taking lightly. My doctor tells us that his only goal of surgery is to stop the progression of the curve, and of course, I want that. Some days I have very mixed emotions - I'm sure you all did, too. No doubt, I will be in a wheelchair soon without surgery, so I am hopeful that the surgery will stop the progression of the curve and also offer some pain relief. Were you all up and down in the weeks prior to surgery??

It seems every time we meet with the doctor, we get another few nuggets of information that send us reeling. Maybe I'm just overly emotional right now. On Wednesday, we found out that I wouldn't be allowed to tub bathe until the fusion has healed, so that is nine months out. This troubles me because so many of you seemed to get pain/muscle spasm relief with hot baths. We thought about getting a walk-in tub, but when seated in one of those, it appears the water only goes to the waist (not much relief for a scoli patient). I see portable hot tubs at a couple of the big box stores here, so maybe that is the way to go. Ed, I think you mentioned having a hot tub - could you maneuver in and out of it without bending or twisting? They told us that in a standard tub, they've found there's no way to get in and out without breaking the BLT precautions, so, no bathing allowed! Ugh.

Found out we need to be at the hospital at 5:30 a.m. on the morning of surgery (surgery is at 7:30 a.m. and will go until 2:30-3:00 p.m.). Also found out that the day before, I should be on a clear liquid diet. Had planned to have dinner with friends the night before, so, only soup for me! LOL Again, I'm sort of bogged down in the details right now.

Some days, I handle everything like a champ, and other days, I'm all to pieces. The biggest problem right now is that everything seems so darned hard! I told my bosses last week that, in all of this preparation for surgery, I feel just pretty awful. It is getting harder and harder to go to work and be productive. After just three or four hours of sitting, all I can think about is coming home and lying down. I'm cranky when I hurt, which is getting to be pretty often these days. Everything, even just breathing, is a struggle. I'm tired. I'm ready to get it over with and see what happens on the other side. I'm trying to be grateful - even made a list of all the things I'm grateful for (family, good friends, great insurance, great job, understanding bosses, the best puppy in the world LOL, etc.). Some days, staying positive is exhausting.

I'm glad to have all the preop stuff over with and now can just countdown to surgery and a new life with my expensive bionic spine. The financial paperwork is on its way to the hospital - maybe they'll take pity on us and help with the BMP (doubtful but hopeful).

Hoping you all are well - hugs to everyone. Thanks for your great advice and insight.

Fifa

green m&m
10-27-2014, 11:23 AM
Hi,

That made me laugh - couldn't they have just handed you a pad and a pen??? Hugs to you - thanks for the info!
Fifa

That was before I was really fully awake, so my eyes weren't even open. If I had my eyes open I'd have talked with my eyes and gestured enough to get a pen and paper to write but all my attempts at point to lips and hiding of hands happened during the short lucid moments during what I believe was the night shift.

Apparently I also signed to my boyfriend (minored in sign language back in school) and shook my fist at him when he said he didn't understand. Pretty sure I asked for lip balm...

I hate dry lips.

fifa
10-29-2014, 09:38 PM
That was before I was really fully awake, so my eyes weren't even open. If I had my eyes open I'd have talked with my eyes and gestured enough to get a pen and paper to write but all my attempts at point to lips and hiding of hands happened during the short lucid moments during what I believe was the night shift.

Apparently I also signed to my boyfriend (minored in sign language back in school) and shook my fist at him when he said he didn't understand. Pretty sure I asked for lip balm...

I hate dry lips.

Hi,

I hate dry lips, too. Will put lip balm on my list and tell hubby to keep me balmed up! LOL Thanks for your reply. Months ago, I saw that someone had said to bring a hair tie/band to keep on your wrist to keep the PCA close by. Hubby has already been instructed on that, too.

Thanks again - take care!
Fifa

fifa
10-29-2014, 09:51 PM
Hi, everyone -

I had my final preop tests this past Friday and got the results today - I'm A-OK to proceed with surgery. Everything else (PFTs, DEXA scan, and bloodwork) are all good.

The last couple of weeks have been very chaotic here, but I'm happy to say that things are finally calming down, so maybe now I can calm down, too. Work is in good shape, the house is ready, my support team is in place.

Next week, I plan not to worry about anything and just BREATHE. I'm actually looking forward to what I call "flipping the switch." I'm going to turn off everything that I can't change and/or get done before surgery and just focus on me and get mentally at peace with what is about to happen. Don't know how to explain it, but I'm fully informed about what is going to happen and have prepared myself, but for the last couple of weeks (on and off) I've had a few pity parties. Will be letting go of that shortly and focusing primarily on gratitude.

My mood is getting a bit better. My doc and the preop nurse at Barnes have stopped nearly all my meds - my ibuprofen is no more. That was the only thing I've been taking for pain for the past four years...that and using lidocaine patches. Anyway, they stopped my multivitamin, ibuprofen, nicotine gum, etc. Tylenol isn't helping me with the pain. So, I've been struggling the last week to cope, but am doing better. As the little things at work get crossed off my list, the load is getting lighter and I feel better.

Thanks to all of you who have replied. Surgery is a week from Monday, and I am READY! Thoughts and prayers up for Peggy and also Tamena, and everyone else in scoli-land. (huge smiley)

Hugs!
Fifa

green m&m
10-31-2014, 10:00 AM
Just wanted to add another item that helped me in hospital -- cell phone strap with a neck lanyard.

I didn't put the neck lanyard around my neck, bur rather looped it through the upper bed rails so I could snap the phone in. At home I did wear the phone around my neck for few days - esp first week while I was alone during the day. Just in case I fell and couldn't get up I'd be able to call for help since phone was attache to me.

http://amzn.com/B002Q413MM

Link to the one I got ( I have amazon prime so I was able to order it few days before surgery and have it in time). I picked a seller that offered prime option -- some of the sellers selling that same item are over seas.

The phone strap comes in two parts so I could leave the long neck strap attached to bed and detach the phone while in use. The center silver button releases the silver ring to detach. I kept the phone attached to the long neck strap when I wasn't using it.

Also had a very long charge cord so I could easily reach the charge cord to plug/unplug without help.

I had my PTs and nurses comment how great the idea of keeping the phone tethered to a strap and attached to bed was. I have an inkling they often have to retrieve dropped phones for patients.

fifa
10-31-2014, 10:49 PM
Just wanted to add another item that helped me in hospital -- cell phone strap with a neck lanyard.

I didn't put the neck lanyard around my neck, bur rather looped it through the upper bed rails so I could snap the phone in. At home I did wear the phone around my neck for few days - esp first week while I was alone during the day. Just in case I fell and couldn't get up I'd be able to call for help since phone was attache to me.

http://amzn.com/B002Q413MM

Link to the one I got ( I have amazon prime so I was able to order it few days before surgery and have it in time). I picked a seller that offered prime option -- some of the sellers selling that same item are over seas.

The phone strap comes in two parts so I could leave the long neck strap attached to bed and detach the phone while in use. The center silver button releases the silver ring to detach. I kept the phone attached to the long neck strap when I wasn't using it.

Also had a very long charge cord so I could easily reach the charge cord to plug/unplug without help.

I had my PTs and nurses comment how great the idea of keeping the phone tethered to a strap and attached to bed was. I have an inkling they often have to retrieve dropped phones for patients.


Hi,

This is a great tip - thank you! Now, I have three things on my "must have" list. LOL

When we were at Barnes a week ago this past Wednesday, hubby and I both were dismayed because our cell phones didn't work very well there. Most places, we couldn't get a signal and had to move near a window to get a call to go through. I may have to take my tablet and e-mail hubby instead of text. I hate to take both, but I also want to be able to communicate (especially since hubby will be commuting back and forth).

Thanks again - hope you are well! (smiley)

Fifa

tae_tap
11-01-2014, 09:18 AM
Fifa,
My husband and I discovered that you need to log onto the wifi network there for phones to work. Now down where they do the myelogram's they do have a blocker for some reason and in a few other selected areas, but the rooms have good signal.

I hated reading your experience with your pre-op visit. I assure you, they have top notch surgical teams and compassionate nursing staff.

Praying for you!
Tamena

fifa
11-01-2014, 12:53 PM
Fifa,
My husband and I discovered that you need to log onto the wifi network there for phones to work. Now down where they do the myelogram's they do have a blocker for some reason and in a few other selected areas, but the rooms have good signal.

I hated reading your experience with your pre-op visit. I assure you, they have top notch surgical teams and compassionate nursing staff.

Praying for you!
Tamena

Hi, Tamena!

Sometimes I put an extra "e" in your name - sorry about that!! (smiley)

Thanks for the head's up about the wifi there. Maybe it was because we were so close to radiology - that happens here in Columbia at Boone around the radiology department. Someone told me that the walls are lead there or have lead in them because of all the radiation (have no idea if that is true or not). We couldn't get a signal in Dr. B's office at Barnes at the "south" part of the hospital. I'll shoot Megan an e-mail and ask how to log onto the wifi...if you know how and can share, that would be great! That's the last piece of the puzzle, I think, before surgery (the last thing I'm worried about). I think I've said this elsewhere, but we have a 15-year-old doggie who gets Tramadol twice a day for his arthritis, so hubby will med him up in the morning, go to St. Louis to be with me during the day, and then come home at night to give our boy his nighttime pill. Doubt there is much hubby can do for me in the hospital anyway. (smiley) I pray the hospital time goes fast and that I don't need to stay for rehab. Will be doing all I can to get out of there ASAP.

Yes, the preop visit was a bit of a nightmare. Trying to give them the benefit of the doubt, though - I mean, I was hurting and it was such a long day for me, plus with all the chaos, we really didn't have time to eat and so we were cranky. I'm pretty patient about snafus and scheduling problems...all we could think when we were there is "we're going to have to come back another day to get all of this done." Part of my problem, too, was/is just being out of my element. I've worked at two of the three hospitals here in Columbia and am very familiar with the third, so just going to Barnes and being in unfamiliar territory is a bit chaotic. Barnes is HUGE! It was a ten-minute walk from the hotel (north side lot) where we parked, and had to get all the way to the south side for the appointments with CPAP and Dr. B. It was a hike for me. After the myelo, hubby pushed me in a wheelchair, so that made it better. It was just such a long day. I poop out now after about three or four hours of sitting - the preop visit (including travel time) ended up being a 14-hour day.

We have the utmost faith in our team...we both adore Dr. B and Megan. I've pushed the rotten preop visit to the back of my brain and am moving forward with nothing but positive thoughts!

Hope you are doing well. Are you gearing up for your visit? We've been told we'll be discharged on Saturday, November 15th, (surgery is Monday the 10th). I don't know if we'll see you or not. We're coming on the 9th and spending the night - I hope to see Peggy if I can. Prayers still going up for her and for you!!

Take care - hugs to you!
Fifa

tae_tap
11-01-2014, 01:10 PM
I will come in on the 17th and stay at the hotel. I have pre-op on the 18th and then we will stay at a family member that lives about 30 minutes away (which is better than my 4 hours away) until the 20th. So unfortunatelly we probably won't pass each other on this trip. Maybe at a post op apt later on.

Your poor husband is going to be tired of that drive. The hospital visit will go fast because you will be in and out so much you will probably lose track of the day. That can be a good thing. As far as the wifi goes, it is an open network so just log on like you do any other time and it will pop up an agreement. Once you accept your good to go. You may have to accept the agreement more than once if you are not active for a while.

Barnes is large! And when we try to fit so much into one day it turns into an overwhelmeing day. I usually stay at the hotel because after so much poking I am not about to ride for four hours home. That is even more painful.

One thing that may ease your mind is if you forget something to bring you probably don't need it and if you do they probably have it. So don't stress too much.

Another thing that helped me coming home with my clothes is have a coue front snap bras because it is tough to actually snap in the back for a while and the hooks are uncomfortable at first.

Your almost there, so continue to breathe. Take a day for you before surgery to do whatever you live to pamper yourself be it a massage, mani/pedi, hair done, or a movie to help reduce the nerves.

Tamena (and no worries on the spelling of my name. Most people can't even pronounce it. Hehe!)

fifa
11-01-2014, 11:30 PM
Hi, everyone. Logging in with my tablet to see how this works. I will miss my laptop while in the hospital!!

Fifa

Susie*Bee
11-02-2014, 06:58 AM
Fifa-- it worked great. We will love hearing from you. You are almost there! How exciting! Just think about all of us who went through if you should feel discouraged at some point. We scolis are tough as nails. You will sail through it. It will make you an even stronger person with a stronger back.

After all your preparations, you'll have plenty of time to rest in the hospital. (Although they do try to get you up and walking as soon as possible!) Best wishes and prayers for a most successful surgery and easy and fast recovery. Hugs, Susie

Lizardacres
11-02-2014, 07:11 AM
Tablets are definitely harder to type on but they are so portable and convenient.

This surgery reminds me of the shots we used to do to the moon. We go fully knowing it is risky and yet we embrace it. So we travel to the moon (under anesthesia) but the journey back is like re-entry was for the astronauts. Our world is almost shaken apart. There is no communication with the outside world for a time and everybody scans the sky looking for the capsule. When it is spotted, everyone is joyful! But the journey is not over yet, the parachute must be deployed safely and the astronauts retrieved. They are weak from living without gravity, but this passes and life goes on.

tae_tap
11-02-2014, 01:39 PM
Fifa,

Do you have to go in the day before for a central line to be put in?

Tamena

fifa
11-04-2014, 10:00 PM
I will come in on the 17th and stay at the hotel. I have pre-op on the 18th and then we will stay at a family member that lives about 30 minutes away (which is better than my 4 hours away) until the 20th. So unfortunatelly we probably won't pass each other on this trip. Maybe at a post op apt later on.

Your poor husband is going to be tired of that drive. The hospital visit will go fast because you will be in and out so much you will probably lose track of the day. That can be a good thing. As far as the wifi goes, it is an open network so just log on like you do any other time and it will pop up an agreement. Once you accept your good to go. You may have to accept the agreement more than once if you are not active for a while.

Barnes is large! And when we try to fit so much into one day it turns into an overwhelmeing day. I usually stay at the hotel because after so much poking I am not about to ride for four hours home. That is even more painful.

One thing that may ease your mind is if you forget something to bring you probably don't need it and if you do they probably have it. So don't stress too much.

Another thing that helped me coming home with my clothes is have a coue front snap bras because it is tough to actually snap in the back for a while and the hooks are uncomfortable at first.

Your almost there, so continue to breathe. Take a day for you before surgery to do whatever you live to pamper yourself be it a massage, mani/pedi, hair done, or a movie to help reduce the nerves.

Tamena (and no worries on the spelling of my name. Most people can't even pronounce it. Hehe!)

Hi,

Yes, the drive will be tiresome, but his company has several "spurs" in the St. Louis area, so he is kind of used to the drive. Good tip about the front close bra - I figured I would just go without. HA!

I'm also toying with the idea of cutting my hair REALLY short. I think my long hair will be a pain later on - thinking of a pixie cut!

Hugs to you!
Fifa

fifa
11-04-2014, 10:02 PM
Fifa-- it worked great. We will love hearing from you. You are almost there! How exciting! Just think about all of us who went through if you should feel discouraged at some point. We scolis are tough as nails. You will sail through it. It will make you an even stronger person with a stronger back.

After all your preparations, you'll have plenty of time to rest in the hospital. (Although they do try to get you up and walking as soon as possible!) Best wishes and prayers for a most successful surgery and easy and fast recovery. Hugs, Susie

Thanks, Susie! It's getting closer every day. I'm SO ready! :)

Hugs to you - thanks for the prayers!
Fifa

fifa
11-04-2014, 10:08 PM
Fifa,

Do you have to go in the day before for a central line to be put in?

Tamena

Hi,

No, I don't - no central line. Hopefully not another thing I didn't know about! Yesterday's bombshell - no recliner! WHAT???? I just bought a new recliner!!!

I tells ya, if you don't have a sense of humor, I don't know how you'd get through this stuff. (smiley)

I have to be at Barnes at 5:30 a.m. Monday morning. Do you have to have a central line? I don't think Peggy had one, but not sure...

Take care - praying for you!
Fifa

JenniferG
11-05-2014, 02:20 AM
Fifa, it seems fairly normal in the US to have the central line put in the day or so before surgery. But my dr. didn't require it, however I woke up with one.

Just wanted to add my best wishes for a successful surgery and smooth recovery. You're on the home run now, and you sound great!

tae_tap
11-05-2014, 06:56 AM
Hi,

Yes, the drive will be tiresome, but his company has several "spurs" in the St. Louis area, so he is kind of used to the drive. Good tip about the front close bra - I figured I would just go without. HA!

I'm also toying with the idea of cutting my hair REALLY short. I think my long hair will be a pain later on - thinking of a pixie cut!

Hugs to you!
Fifa

I did the pixie cut for my surgery too thinking long hair would be too hard. I did wish I had the long hair afterwards because you could just throw it up in a hair tie. I found that the short hair has to be blow dried in order to look good and my arms were unable to handle the dryer (I have thick hair) until about 5-6 months.

Going without the bra was the best! I hated clothes period touching me for a little while.

Time is getting closer.

((((hugs))))
Tamena

tae_tap
11-05-2014, 07:02 AM
Hi,

No, I don't - no central line. Hopefully not another thing I didn't know about! Yesterday's bombshell - no recliner! WHAT???? I just bought a new recliner!!!

I tells ya, if you don't have a sense of humor, I don't know how you'd get through this stuff. (smiley)

I have to be at Barnes at 5:30 a.m. Monday morning. Do you have to have a central line? I don't think Peggy had one, but not sure...

Take care - praying for you!
Fifa

I did have a central line put in the day prior to surgery. It makes it easier during the hospital stay. Everything is done through it so no extra poking and proding. I know it is something Lenke and Kelly do for all their big surgeries. I was scared to death and found it was really easy.

No recliner? I did not know that. We too bought one prior to surgery and it is the only thing I find comfortable to be in. I probably would never have left my bed for six months without it.

You have to have a sense of humor to make it through all of this. Without it we would become bears, hehe!

Tamena

Lizardacres
11-05-2014, 07:20 AM
Really curious about the recliner- do you know why he is nixing this?

I had shoulder length hair and had it cut shorter in stages over my last two appointments. I have had so many compliments, I think that my longer hair was weighing my face down. I have really thick hair and it would still be wet underneath six hours later so thought it would be easier and faster to care for. I'm really loving it. But if you love your hair I wouldn't do a drastic change right now.

fifa
11-05-2014, 10:44 PM
Fifa, it seems fairly normal in the US to have the central line put in the day or so before surgery. But my dr. didn't require it, however I woke up with one.

Just wanted to add my best wishes for a successful surgery and smooth recovery. You're on the home run now, and you sound great!

Thanks, Jennifer! I don't think the "scared" really goes away preop, or maybe it just hasn't for me yet. The amount of pain that I've been in since they took my ibuprofen away on October 22nd is just excruciating. I didn't know how much I was relying on it. Funny, but now that I'm not taking anything, I have other joints that are acting up, especially my wrists/hands. WOW!

I'll have to check with my nurse about the central line. I think I asked about it some time back and they said no (pretty sure). I think I asked about that and donating blood in advance (they said no to that, too). I'll check again though.

Wouldn't be surprised if I woke up with one... HA!

Take care - thank you!
Fifa

fifa
11-05-2014, 10:52 PM
Really curious about the recliner- do you know why he is nixing this?

I had shoulder length hair and had it cut shorter in stages over my last two appointments. I have had so many compliments, I think that my longer hair was weighing my face down. I have really thick hair and it would still be wet underneath six hours later so thought it would be easier and faster to care for. I'm really loving it. But if you love your hair I wouldn't do a drastic change right now.

Hi!

They told me they want me upright and not reclined - they said that reclined or semi-reclined was not a position they want me to be in. I guess I'll find out more about that later. I have a Tempurpedic bed that can have the foot and head raised. I was kind of counting on doing some work later on while in bed, but with my head raised up some.

I'm probably whining too much, but every time I talk to someone at the hospital, it seems like I "lose" something else. I expected to be NPO (nothing by mouth) after midnight the night before surgery, and I was okay with that. I have to do clear liquids now the whole day before surgery. My hubby and best friend were going to go to dinner in St. Louis the night before surgery. Guess I'll have to find a "soup bar." (FROWNY FACE) I know the rationale and certainly do NOT want an ileus, but for Pete's sake.

Yep. I'm definitely whiney. LOL

I'm back and forth about the hair. It is down below the bra line and a real pain in the behind when rolling over in bed, etc. I may just "shoulder length" it or something, but the temptation is certainly there to do #4 clippers and just have rid of it. (bald smiley) Still thinking it over.

Thanks for your reply! Big hugs!
Fifa

hdsluckygirl13
11-06-2014, 11:00 AM
Fifa,
I have been trying to read through and catch up on your journey to begin on the other side, and just am inspired by your strength (as well as everyone's on here). I feel so similar to you especially because I am struggling with when to have this surgery. So to know that you struggled and finally are days away from having it and being able to read your thoughts/questions leading up to that has helped relieve some of my anxiousness. I pray daily and will add you to my list. Big hugs,

Susie*Bee
11-06-2014, 11:37 AM
Just some thoughts thrown in to muddle you a little more...

I could eat dinner the night before, but before 6:00, and with the knowledge that I had to do a selfie enema soon afterward in the hotel. Pretty much took the joy out of eating it. (frowny face too...) Also, even with that I developed an ileus, so you never know. Either 5 or 6 days, NPO, not even ice chips.

Hair: I am glad I had decided a couple years ahead of time (had nothing to do with the surgery) to chop off my waist length hair to a very short "do" (we used to call them "pixies") -- as I really think it would be harder on my arms to shampoo the long hair and wrap it up than to do a very quick blow-dry. And it used to get all tangled around my neck at night, etc. I've never regretted losing my locks.

I did not have to worry about reclining because we did not have one and I was in a TLSO brace for 5 months afterward. My surgeon only puts some people in them and apparently he thought I needed one... I would think yours is nixing it because of the fear of you bending your fusion. You need to be straight, and that might possibly cause you to slink a little. ????

Best wishes. Even if you have clear soup, at least you will get to enjoy the company of your friends and hubby that night, and that will be so nice! You are almost there, Fifa! I am so excited for you! Praying for you and a very successful surgery and recovery!!! Cyber hugs, Susie

PeggyS
11-06-2014, 04:45 PM
When you have your surgery, I'll be 2 weeks post-op. I've been think inking about you and everything I want to share. I just caught up with reading your posts and I'll try to remember helpful things! I'm going to post those on my thread.

Sending blessings & gratitude your way. It sounds like you've got that resource covered!
Peggy

PeggyS
11-06-2014, 07:48 PM
Take some jello cubes to dinner with you & 'pretend' they're shots!

tae_tap
11-06-2014, 08:10 PM
Take some jello cubes to dinner with you & 'pretend' they're shots!

Love this!

fifa
11-08-2014, 12:49 PM
Fifa,
I have been trying to read through and catch up on your journey to begin on the other side, and just am inspired by your strength (as well as everyone's on here). I feel so similar to you especially because I am struggling with when to have this surgery. So to know that you struggled and finally are days away from having it and being able to read your thoughts/questions leading up to that has helped relieve some of my anxiousness. I pray daily and will add you to my list. Big hugs,

Thanks, Crystal! Your own journey has started, but will speed up significantly once you set a date. When I first saw Dr. Buchowski two years ago, I was overwhelmed by the enormity of what needed to happen. I did a LOT of research, which is how I found this forum. The forum has been a godsend to me. It helped me greatly to understand that all of my symptoms are pretty common for scoliosis sufferers. I felt very alone, but the group here seems like family somehow. The advice, the wisdom, and the humor has been invaluable to me.

This surgery and the aftermath seemed to me to be "taking away" more than it was going to give me. This is hard to explain, but all I could think about was what I would never be able to do again, so I tried to put this off as long as possible. My surgeon was in no rush, so I was hopeful I could delay for some years. I had an episode in August where I heard a pop and couldn't walk, and all of a sudden it occurred to me that I might actually do irreparable damage to my spine if I waited any longer. Again, this is hard to explain, but what I'm trying to say is that for the last two years, I thought surgery would be something I would "choose" to do at some point. Well, I "chose" to do it ASAP since the episode. LOL Hope that makes sense.

Knowing that so many people here have been through this has helped me a great deal. There is life on the other side. The things I thought I would lose pale in comparison to possibly being in a wheelchair soon. The choice, in essence, was taken away, or at least got a whole lot more clear. I'm tired of suffering, tired of being limited, tired of being "disabled." I'm ready for life on the other side, and I know now I can do it. I've seen Ed ski on video....Tamena is tap dancing, and Golf Nut is golfing! LOL There is hope for all of us on the other side.

No one can make your decision for you, so hang in there. You are on your way.

I'll be out of commission soon for awhile - surgery is in two days. I'll post soon and hopefully can help you the way others here have helped me. Listen to everyone here and take from it what you need. And do take care of yourself!

Fifa

fifa
11-08-2014, 12:53 PM
Take some jello cubes to dinner with you & 'pretend' they're shots!

Hi, Peggy!

I laughed out loud at this!!! My best girlfriend and I are headed to The Lou tomorrow. I told her, "Chardonnay is a clear liquid, right????" hahaha

Take care - hope to see you soon!
Fifa

fifa
11-08-2014, 12:54 PM
When you have your surgery, I'll be 2 weeks post-op. I've been think inking about you and everything I want to share. I just caught up with reading your posts and I'll try to remember helpful things! I'm going to post those on my thread.

Sending blessings & gratitude your way. It sounds like you've got that resource covered!
Peggy

Thanks, Peggy! You're posts are very helpful! See my update below. See you soon!
Fifa

fifa
11-08-2014, 12:55 PM
Fifa,
My husband and I discovered that you need to log onto the wifi network there for phones to work. Now down where they do the myelogram's they do have a blocker for some reason and in a few other selected areas, but the rooms have good signal.

I hated reading your experience with your pre-op visit. I assure you, they have top notch surgical teams and compassionate nursing staff.

Praying for you!
Tamena

Hi, Tamena -

I sent you a DM. Glad to know the wifi works well there - we are depending upon it!
Fifa

fifa
11-08-2014, 01:24 PM
Hi, everyone -

Had a real bad day yesterday and was too tired to post last night. Surgery is in two days (Monday 11/10/14).

I was getting ready for work yesterday morning about 8:30 a.m. when the phone rang. My mom called - my dad blacked out, fell, and was headed to Columbia in an ambulance. She said he couldn't move his arms or legs. I got to the hospital here about 9:00 a.m. and met the ambulance. Didn't get home until nearly 11:00 p.m. last night. It was a long, terrible day. Yesterday was supposed to have been my last day at work - I was to finish training my replacement yesterday, so of course, that didn't get done. (sad smiley)

My dad hit his head when he fell, and his spinal cord is compressed from C2 through C6. He is 81 years old, so they currently doing tests to see if he is strong enough to have surgery. The neurosurgeon thinks that dad will need laminectomies from C4-C6 with fusion of C3-4, C4-5, and C5-6 with rods and screws. He has a LOT of stenosis, so the canal was already narrowed way down. The whiplash from hitting his head contused the cord and made it swell. Currently, he has little feeling in his legs (but can move them), and can't feel his fingertips (can move his arms and has a fairly good grip). Any time he moves, coughs, etc., he gets "electric shocks" down the arms and legs....can anyone relate??? I can!! Dad got a huge dose of IV steroids, so the swelling is down some, but he will still need surgery.

So, my mom doesn't drive and they live an hour away from here. I'm heading to St. Louis tomorrow for surgery on Monday. They will probably do dad's surgery mid next week.

Typically, my mom would stay here with us and we could support her and my dad through his hospital stay. I'm grateful we have good friends and relatives, so they will be able to transport my mom back and forth from their home to Columbia since we cannot. We decided as a family last night that I would go ahead with my own surgery plans...my first thought was to postpone this. However, I know in my heart there is NEVER going to be a good time for me to do this. There will always be work to do, always be impending doom with a family, etc.

This is just such a terrible, helpless feeling, and my controlling self wasn't prepared for this snafu. I've given everything over to God this morning and am at peace. Wish we could get my dad in an ambulance and have Dr. Buchowski fix him up, too.

Heading over to the hospital, then to work...I really just wanted to hang with hubby and puppy today and just be together.

Any and all prayers appreciated! Will post back as I am able.

Fifa

Susie*Bee
11-08-2014, 02:14 PM
Oh Fifa, I am so sorry for this terrible accident. Of course I'll pray for your father and mother and the whole situation. You are in my prayers. May He bring you peace and strength as you head into your own surgery, as well as your father's. I'm so glad you have a good support group to help your parents and drive your mother. Many, many hugs.

hdsluckygirl13
11-08-2014, 03:22 PM
Fifa,
I am so sorry that you are having all of this happen just days before your surgery. I am proud of you for knowing in your heart what you need to do, despite the fear and other feelings you most certainly are having. I hear so much of what I am feeling in what you are saying, it gives me goosebumps! Just take a very deep breath, and know that it is all in God's hands, and everything happens for a reason. Thanks for updating us, please take care of yourself.

Karen5
11-08-2014, 07:56 PM
Oh no, I'm so very sorry to hear you have that much more on your plate right now! I'll be thinking of you, especially as we head to the hospital Monday, too. I hope your surgery and recovery go well!!

tae_tap
11-09-2014, 05:09 AM
Oh Fifa! This is horrible news! I will add your parents to my prayer list. I find strength in your decision to continue on as planned. That is the right decision because you would be of no help in pain. Right now you have to put you first which I'm sure is easier said than done.

We will be watching and waiting for updates. Sending positive thoughts and soft hugs.
Tamena

jackieg412
11-09-2014, 06:54 AM
Prayers and best wishes for your whole family.

titaniumed
11-09-2014, 08:27 AM
Fifa, I am so sorry about about your dad....

Your right about never having a good time or right time to have surgery....trust that everything goes ok and it will happen.

Deep breaths for now....post when you can

Ed

PeggyS
11-09-2014, 08:47 AM
Fifa,
I'm so sorry about your dad. I tried to post a reply last evening, but it seems to be lost. In it, I encouraged you to give your worries about your dad to God. I saw that you've already done that and felt peace - amazing isn't it!
Now, remember God loves you and no matter the outcome, HE will see you through it. You are going to be a champ and come through the surgery just fine. You may not believe that, at first.
You are a strong, brave woman. You've done lots of research and you've reached out to others for encouragement & information. You've been so encouraging to me!
You're ready!
Praying that Jesus has His arms wrapped around you and your dad for comfort & healing.
Sincerely, Peg

PeggyS
11-09-2014, 06:15 PM
On your mark, ready, set .....GO! You'll do well! You're surrounded by prayer!

hdsluckygirl13
11-09-2014, 07:22 PM
On your mark, ready, set .....GO! You'll do well! You're surrounded by prayer!
Love what Peggy said, and I don't think that I can say it any better. See you on the other side... Keeping you and your family in my thoughts and prayers.

jrnyc
11-09-2014, 07:34 PM
so very sorry to read about what happened to your father...
i hope the doctors/surgeons can help him to feel better and
to get better....however slowly the healing happens...just so it
happens...

was just going to mention, based on a previous post, that
getting a "Mia Farrow" (pixie) hair cut is so very freeing...i used
to do it in summer when i was younger...always said women
should try it at least once in their lifetime...(and hair does grow
back)...it would be one less thing to have
to deal with while recuperating from fusion surgery.

wishing you a smooth operation and uneventful recovery....
please take care of you....then u will be able to help your dad.

jess...& Sparky

fifa
11-09-2014, 10:16 PM
Oh no, I'm so very sorry to hear you have that much more on your plate right now! I'll be thinking of you, especially as we head to the hospital Monday, too. I hope your surgery and recovery go well!!

Hi, Karen. I'm praying for you and your daughter. I'm on my tablet so wont write much tonight. She's in good hands!

Fifa

fifa
11-09-2014, 11:01 PM
Hi, everyone. We're at the Parkway hotel. I'm trying to eat some last-minute jello. We arrived about 10:30 pm tonight...so late. I had to clean up loose ends at work today, pack, laundry, plus see my folks. So, we got away really late. Peggy, I'm sorry I didnt get a chance to stop by. You are welcome to come see me if you are able. Don't know when I'll be able to post again. Typing on this tablet is so slow!

I feel relief tonight. Suddenly, all the planning, preparing, and worrying is over. Now, it is all about the healing.

I'm having a little broth before midnight so will close for now. THANK YOU ALL for your support and prayers. I hope you all know how much you have helped me. This time tomorrow, I'll be on the other side. Please pray for me, my incredible husband, and my folks. It sure was hard to leave them tonight.

Hopefully hubby will post an update in a day or two.

Love, hugs, and prayers to you. Namaste!

Fifa...who will be bionic tomorrow!!!!

fifa
11-09-2014, 11:17 PM
Hi, everyone. We're at the Parkway hotel. I'm trying to eat some last-minute jello. We arrived about 10:30 pm tonight...so late. I had to clean up loose ends at work today, pack, laundry, plus see my folks. So, we got away really late. Peggy, I'm sorry I didnt get a chance to stop by. You are welcome to come see me if you are able. Don't know when I'll be able to post again. Typing on this tablet is so slow!

I feel relief tonight. Suddenly, all the planning, preparing, and worrying is over. Now, it is all about the healing.

I'm having a little broth before midnight so will close for now. THANK YOU ALL for your support and prayers. I hope you all know how much you have helped me. This time tomorrow, I'll be on the other side. Please pray for me, my incredible husband, and my folks. It sure was hard to leave them tonight.

Hopefully hubby will post an update in a day or two.

Love, hugs, and prayers to you. Namaste!

Fifa...who will be bionic tomorrow!!!!


Forgot to say that I couldn't find the time this weekend to get a haircut. Really wanted a pixie at least. Oh, well. LOL

tae_tap
11-10-2014, 06:45 AM
Sending positive thoughts, hugs, and prayers!

Tamena

Karen5
11-10-2014, 07:42 AM
Thinking of you today, Fifa, and hoping all goes well!

PeggyS
11-11-2014, 08:19 AM
My thoughts & prayers are with you, Fifa. You'll probably walk a little bit and sit. Hope you find a comfortable position for sleeping!

jackieg412
11-11-2014, 01:22 PM
Hope all is well. It's tough right now but will get better.Jackie

tae_tap
11-12-2014, 06:27 PM
Your on my mind. Hope all went well and they are controlling your pain okay. Praying for you and your dad.

((((Hugs))))
Tamena

tae_tap
11-15-2014, 03:38 PM
Hoping we hear something soon on you.

Tamena

titaniumed
11-16-2014, 10:12 AM
A few more days and we will hear something......

Ed

tae_tap
11-16-2014, 10:47 AM
Ed, you know I don't have much patience. I will be down in Saint Louis tomorrow and will check on Fifa if we have not heard anything by then.

Tamena

titaniumed
11-16-2014, 10:56 AM
When is your surgery?
Ed

fifa
11-16-2014, 11:50 AM
Hi, everyone -

I'll post just bits and pieces for now as I tend to fall asleep quite a bit while posting/reading.

I posted here last night, but damned if I can find it anywhere or any of the replies if there were any. We got home from St. Louis yesterday about 3:00 p.m.

I'm having terrible problems with what I assume is an ileus. Told them I thought they were sending us home too early and I didn't want to go, but they said I didnt have a choice. When we left the hospital, I was vomiting, soiling myself every time I tried to get out of bed, and hadn't kept anything down. Right before they booted us, they made me walk 300 feet and do the seven stairs that I needed to do to get in my house. What I'm saying is that I hadn't been "up" to physical therapy until that time - I just absolutely felt terrible.

So, right now, I'm at home and just about ready to call an ambulance and be admitted here in my home today. I thought I would be in a lot better shape than I am or they wouldn't send me home. This is ridiculous.

NEED ANY SUGGESTIONS YOU MIGHT HAVE FOR DEALING WITH AN ILEUS, PLEASE.

The Oxycontin has taken all the saliva away from mouth (hope that makes sense). I can't get anything wet enough to chew it. I had hot tea last night and a heating pad, which seemed to help. I'm not passing gas much and the few "incontinence bowel" episodes I had in the hospital were days ago and have stopped. I basically threw up all the lactulose they gave me. If you all have any suggestions, i'm happy to hear them. Oh, and my dad is doing okay for now. They transferred him to our home town hospital (an hour from me)...not that I could get there anyway. He's doing better and will have surgery in a couple of weeks.

Will keep you posted as I'm able. Sorry. I don't know where yesterday's post went!!

Fifa

fifa
11-16-2014, 12:19 PM
Hi,

You all might remember that I had wanted to get my hair cut before surgery. I sure wish I could have found the time to get that done. Had I know that I would have halo traction intraoperatively, we sure would have. I have three giant sore spots on my head...one behind each temple and on in the very top of my head. I had no idea they would do this. All of my hair is just one big rat's nest. I've worked on it about all I'm going to and will cut it off soon.

Hope you are all well. I'm pretty miserable.

Fifa

hdsluckygirl13
11-16-2014, 01:02 PM
Hi,

You all might remember that I had wanted to get my hair cut before surgery. I sure wish I could have found the time to get that done. Had I know that I would have halo traction intraoperatively, we sure would have. I have three giant sore spots on my head...one behind each temple and on in the very top of my head. I had no idea they would do this. All of my hair is just one big rat's nest. I've worked on it about all I'm going to and will cut it off soon.

Hope you are all well. I'm pretty miserable.

Fifa
Fifa,
I am still a newcomer on this site, so I don't have any words of wisdom or suggestions to help with your ileus/stomach issues. What I have heard but haven't tried myself is walking stimulates the digestive system, and pear juice helps with constipation. If you aren't able to keep anything down though, not sure why they even sent you home. That sounds very scary, and I am so sorry that you are so miserable. I know that allot have been praying and thinking of you. It is good to hear from you.
I am sure that someone knowledgeable will chime in soon with suggestions. Hugs =)

tae_tap
11-16-2014, 01:37 PM
Fifa,

I can not believe gut experience! This saddens me! What were their reasons for sending you home so early? I can't believe they didn't even keep you seven days! Could the vomiting be from the pain meds? If you feel something is wrong get to Boone. They have an excellent spinal floor and a great PT department. I did feel that PT at Barnes was subpar. I only saw them once before the walk to be discharged. At Boone I saw them 2-3 times a day.

Keep your head up. You have my number if you need to talk. I will continue to pray.

Ed,

I have pre-op Tuesday and surgery is Thursday. It is nothing as serious as what everyone else is having so I'm not as stressed. Heck, it should be a walk in the park compared to last year.

Tamena

susancook
11-16-2014, 02:32 PM
FIFA, you are in my thoughts and prayers. I hope that you got someone to figure out what is wrong with you medically. Incontinence and vomiting can be serious problems. I am sorry that they did not keep you in the hospital. It is difficult to advocate for yourself when you feel so poorly.

Dr. B should have told you about the halo unless he did not plan to use it and needed it unexpectantly to stabilize your spine. Have that on your list for your checkup.

Bad things happen to good people. You will get better.

Susan

Lizardacres
11-16-2014, 03:29 PM
There is some evidence that chewing gum can help to get your gut moving again and it shouldn't cause you to vomit as it is a sham feeding. Just don't fall asleep with it in your mouth! Do try and eat a little something as this is also supposed to help. I really hope you get some relief soon.

leahdragonfly
11-16-2014, 03:37 PM
Dear Fifa,

I am so sorry this is happening to you…something similar happened to me after my first surgery…I was discharged with uncontrolled 9/10 pain and was barely able to drink fluids. I could not eat anything due to nausea. I suffered greatly at home for another few days with 8/10 pain, no sleep, was anemic, dehydrated, extremely painful constipation, etc, similar to you. I went to my local ER where I hoped to get an IV, maybe some labs, etc. Unfortunately the ER doc was a real asshole and sent me home in a cab at 3 am after a morphine shot. I asked for an IV and he said I could sip water by the teaspoonful. I am an RN and I knew this was terrible treatment, but I was too weak and painful to speak up for myself, and my husband was home with our little kids.

Anyway, I think your experience would be different than mine. It would have to be! You could also call your PCP for advise.

If tried an enema without much luck then had to resort to Magnesium Citrate. I did not have a BM for 10 days after surgery, and when all the laxatives finally kicked in it was excruciating. On the upside, I turned the corner dramatically on day 11 and things started to look up from there.

Please consider going to your local ER or urgent care clinic.

hdsluckygirl13
11-16-2014, 04:26 PM
There is some evidence that chewing gum can help to get your got moving again and it shouldn't cause you to vomit as it is a sham feeding. Just don't fall asleep with it in your mouth! Do try and eat a little something as this is also supposed to help. I really hope you get some relief soon.
I read that chewing gum helps as well. I wouldn't try solid food right away though, maybe start with beef or chicken broth, clear liquids, and when you can keep that stuff down, start of solid food.

titaniumed
11-16-2014, 04:48 PM
Warm prune juice is a favorite for constipation

Magnesium Citrate Solution (sold over the counter at your local pharmacy) I would get a few bottles. This is a powerful laxative......drink the whole bottle and chase with water. Stay close to the toilet.

Walking and sipping on water all day long helps keep the plumbing moving. Fiber is good.....Protein is also needed, eat sliced roast beef as its easy.

If you vomit, you lose all your nutrition. When I was vomiting, I had to force myself to eat.(Chicken soup) Its almost impossible to maintain your increased nutritional needs after any major surgery, that’s why I say this. Nutrients are extremely important right now, along with the constipation battles that happen on opoids. I was also on Oxy and it didn’t cut the mustard for pain and was switched to Percoset. Percoset is Oxy with tylenol.

Stay away from fatty foods.....they will kill you right now. No dairy and no cheese......

Ensure drinks are also good to have around.....Yogurt is good food.......Yogurt is excellent.

Hot showers help.....

2-4 inches of latex foam topper for the bed helps with sleeping.....

I know this is an absolutely dreadful time.....many of us were there. I was basically in a survival mode where everything is about surviving. Every minute I was trying to get somewhat comfortable.....even if its for a minute.

Hang in there.....and no falling!

Keep notes on everything. Meds, Food, BM’s, walking, sleeping etc....

Ed

PeggyS
11-16-2014, 06:14 PM
Oh, Fifa-

what a mixed bag! I'd agree that you were released too early & PT was not a gradual process thing. I bet it was your ins company. Do you know, yet, if you'll be able to get in-home health care & PT?

If you're super constipated & need to clear out EVERYTHING . . . My husband's dr gave him a homemade cocktail: 1 bottle of magnesium citrate ( clear, flavored, found in stores near constipation stuff) + 1T mineral oil + 2T milk of magnesia. Actually, you may want to cut the recipe in half.

I'm so sorry to hear your transition from the hospital was so rough! I wasn't doing anything for myself (8 days), til I got to rehab. I didn't turn on the. iPad til then & it was very uncomfortable to hold.

It sounds like you need a ton of rest & little, frequent walks with a walker. Do your best to ignore the little things at home.

Did you receive my voicemail today? My daughter was going to take me to visit you today.

Dry mouth is horrible! Sometimes I trip over my own words! Rehab dr prescribed biotene gel. It helps a little tiny bit. I think it can be purchased over the counter.

Good news about your dad!!!

Take care, my friend. Sending prayers your way.

fifa
11-16-2014, 06:27 PM
When is your surgery?
Ed

Hi, Ed -

Tamena's surgery is Monday the 17th, so tomorrow. :)

Fifa

Thanks for all of you hanging in there with me. I posted something yesterday (darned near killed me to do it but wanted you all to have heard something from me) and I can't figure out where it went. Just trying to rest tonight.

fifa
11-16-2014, 07:45 PM
I guess I'm too messed up to post. I just lost a second detail-filled post that I don't know how to get back. I'm sorry. I'm going to get through one more night here and see what happens tomorrow. My primary care doc will be bck tomorrow and will now what to do

Hug and love to all of you.. Please keep me in our prayers. Thanks!

jackieg412
11-16-2014, 07:53 PM
Fifa the first weeks are really tough. Maybe the Dr can change your meds to something easier on you. Those meds can make you sick. I was only in the hospital 5 days. But I went to rehab because I live alone. It seems early but if you are getting good care at home and a nurse visiting and some PT. There isn't anything else but rest and walk.

Karen5
11-16-2014, 09:31 PM
Oh my gosh, Fifa, I'm horrified to hear how you were treated after your surgery! It sounds like they discharged you way too early. I hope you can get in with your doctor or an ER and get taken care of soon!!

PeggyS
11-17-2014, 05:35 PM
I guess I'm too messed up to post. I just lost a second detail-filled post that I don't know how to get back. I'm sorry. I'm going to get through one more night here and see what happens tomorrow. My primary care doc will be bck tomorrow and will now what to do

Hug and love to all of you.. Please keep me in our prayers. Thanks!

That kept happening to me, too! I finally started writing on my notepad app. Then, I could copy & paste.

I sure hope today was better for you! I can't get over how differently we were treated: same surgeon & same hospital! I still say it had to be insurance calling the shots - which, of course, is ridiculous. I often wonder where the common sense went!

Did you go to the er in your hometown? You've been on my mind & in my prayers.

leahdragonfly
11-18-2014, 07:48 AM
Dear Fifa,

I hope you are feeling a bit better and that your digestive issues are improving. I hope you will post when you feel up to it. Right now it's survival mode, day by day. Soon you should turn a corner and start to feel a bit better. Hang in there!

Susie*Bee
11-18-2014, 01:08 PM
Dearest Fifa-- I have been following along and read with horror at the mistreatment you received from the hospital when they dismissed you way too soon. I cannot believe it! When you are feeling better, I would write them a letter citing negligent action on their part. Ditto with your insurance carrier. I would think either/both would be liable.

Right now, though, just take care of yourself (let someone else do that) and sleep and mend and know that prayers or healing thoughts are being sent your way. Gentle hugs, Susie

golfnut
11-18-2014, 08:16 PM
Fifa,
I am so sorry you were sent home too early from Barnes. I hope you feel a little better each day. I remember the horrible dry mouth and the issues with bowel movements, although I wasn't sent home with an ileus which is crazy. I think insurance companies dictate so much of what goes on with discharge from the hospital. The first month is awful, but there it will gradually get better. Hang in there, but be vocal for your needs!

Rise
11-19-2014, 12:28 PM
Hi Fifa,

So sorry to hear how you were treated. I'm in no way defending the insurance companies (face it - they're a business who's goal is to maximize their profits while minimizing expenses) but the buck stops with the hospital and the doctor. The insurance company didn't discharge you - you're doctor did. He knew your condition. It's not as if he showed up the next morning to examine you and was told you weren't there. It's convenient and probably easier to blame a faceless company than to point the finger where it belongs - at the doctor and the hospital. In my opinion they both did you a disservice.

Being four months post- op myself I can assure you that while it may not seem possible now this all shall pass and you will regain your strength and self sufficiency. Best wishes for a speedy recovery but don't let your doctor or the hospital off the hook so fast. You deserved better from them both.

Risë

fifa
11-23-2014, 12:51 PM
Things arent going very well right now. Been trying to leave messages but when i post them, they disappear. I'm way over medicated. Miss you all and cant stop crying. Cant seem to sit up unless i use an arm to keep me propped up. Surgery was the tenth, discharged saturday the fifteen from barnes. Readmitted to boone in columbia on monday the 17th. Had one bm since. I'm just high as a kite and dont know what to do now. Cut off all my hair, which sounds crazy, but it was a rats nest of tangles scabs and blood. Didnt realize they were going to use a halo for traction. Will post soon. Want to submit this before it disappears. Hope you are all well. Peg i got your message. When i can speak without sobbing, i will call you soon. Tamena, i'm praying for you. Karen, hope girl child is well. Love you all.

Fifa

fifa
11-23-2014, 01:15 PM
Hi, all.

Trying to catch up a bit if possible. I logged in but when I tried to submit the post, it was if too much time had passed and i had to log again again, and then the post disappeared.

I ad surgery on the tenth of november. Seemed to go well. I had the"board nailed to the butt" feeling so many of you have mentioned. I was doing pretty well. The first thing I remember was me asking for an ice chip or a water swab for the the mouth. My mouth was SO dry. The tech told me I would need to have a bowel movement first and then I could have an ice chip. That was meltdown number one. I just started sobbing and heaving to the point where i couldnt catch my breath. I think i was pretty loud. I wasnt trying to be an ass, just had never heard of needing to have a bm before you could have your lips moistened. Tech eventuaully slunk off. Dont recall seeing him again.

think hubby or someone slipped me an ice chip. God bless them, whoever they were. Saving this and will continue.

fifa
11-23-2014, 01:48 PM
So, for the most part, things have been okay I guess. I wasn't passing any gas, so they wouldnt feed me or give me anything to drink, no ice chips, etc. I did the best i could. I was more dried out than anything...not hungry at all. I was in the hospital for i had three roommates. I could not stop crying, moaning, etc. It was the drugs more than anything. Joanne, wherever you are and your peppy, funny little friends are, God bless you and them for sneaking contraband diet Dr. Pepper to me. MyIV blew at least a half dozen times and the nurses had to keep resetting it, so my poor roommate got no rest. Bless you girls.

Fifa

PeggyS
11-23-2014, 06:24 PM
Fifa!

It's so good to hear from you, but I sure wish you felt better! What an ordeal!
What did they do for you at the er? Do you have a family dr who can help figure out your meds?
I read an old thread about balancing constipation & diarrhea. I'm sipping a glass of pear juice right now! There might be some helpful tips for you.
I just read a statement from my insurance co. Saying they've denied hospital coverage after day 5. I wasn't informed - I'll have to see how that plays out b/c I was there for 8 days. Guess I'll attempt some phone calls tomorrow.
Are you able to sleep?
Please know that you're in my prayers!!

titaniumed
11-23-2014, 07:06 PM
Fifa

After I came home, I couldn’t post....and e-mails were down to just a few words because I was in survival mode where every minute was spent trying to get comfortable some how.
Remember that this immediate recovery period will pass in time....Things will get better soon.

Use your e-mail program to construct your posts. Simply create a new e-mail and type your post there. After you are finished with it, then open NSF and copy-paste it in. You can also write your posts and send them back to you in your e-mail program. You can copy-paste and alter them at a later time.

I will keep this short for now, your bum must be hurting since we can only sit for 3 minutes....(smiley face) it gets better....

What meds are you on and how many do you take? I was basically taking 75-100mg of Percoset for the first 6 weeks......Percoset 7.5/325 (The standard heavy duty issue)

Hang in there

Ed

susancook
11-24-2014, 12:28 PM
Hope that you are finally settling in at home. Sending you healing and good bowel movement messages.
Susan

fifa
11-27-2014, 06:30 PM
Fifa

After I came home, I couldn’t post....and e-mails were down to just a few words because I was in survival mode where every minute was spent trying to get comfortable some how.
Remember that this immediate recovery period will pass in time....Things will get better soon.

Use your e-mail program to construct your posts. Simply create a new e-mail and type your post there. After you are finished with it, then open NSF and copy-paste it in. You can also write your posts and send them back to you in your e-mail program. You can copy-paste and alter them at a later time.

I will keep this short for now, your bum must be hurting since we can only sit for 3 minutes....(smiley face) it gets better....

What meds are you on and how many do you take? I was basically taking 75-100mg of Percoset for the first 6 weeks......Percoset 7.5/325 (The standard heavy duty issue)

Hang in there

Ed

Hi, Ed -

You've brought up an interesting point and one I've been meaning to mention. I'm not a big drug taker and really never have been. The ortho group here over the years has always prescribed heavy-duty Motrin and maybe a muscle relaxant (Flexeril) if you're lucky, in addition to weeks of physical therapy and the occasional steroid injection into the spine. I always found this irritating because I felt like if my ailment was such that all of the above plus surgery was necessary, one might believe a pain pill or two were in order. LOL. So, over the past 25+ years, I kind of got used to treating my pain conservatively with ice, massage, occasional heat, rest, and motrin. In fact, Motrin was worked so well for me over the years that I stopped buying and using Tylenol - found that it did really nothing to help backache, let alone headache or any other ache.

So, I was discharged from Barnes on November 15th, a Saturday (was admitted and had surgery on the 10th). Discharge meds include a Vivelle estrogen patch, a progesterone pill once daily (I'm peri-menopausal), Prilosec daily (I have a tendency toward acid reflux), calcium, Vitamin D, and a multivitamin, plus Oxycodone 5 mg one or two tablets every four hours as needed for pain, diazepam (Valium) muscle relaxant 5 mg one tab every six hours as needed for spasm, baclofen 10 mg three times per day for muscle spasm, and doccusate-senna one tab twice per day for constipation. I think that is the whole list.

When I was discharged on Saturday (which they didn't tell me until Saturday morning), my goals as written on the bedside board were to have pain of 2 out of 10 and be able to ambulate idependently up seven stairs (there are seven stairs leading to the main level of our floor). Up to this point, I had not had a bm and was on clear liquids only. I wasn't really passing any gas, either, and the Lactulose they were giving me through a straw was coming right back up as soon as I drank it down.

Basically, I think I just had too much med on board. I couldn't keep anything down, and in typical hospital fashion, they bring you your breakfast and they want to start drawing blood, doing vitals, etc., so breakfast gets nasty pretty fast. With me, they were trying to get me to sit in the bedside chair to eat breakfast. By the time I had log rolled over to the chair, I had little energy to try to eat anything, but I did drink everything they gave me.

So, I think I was over-medicated. I don't know how many IVs they had to replace because they kept blowing the line. So, that gets us up to discharge from Barnes on the 15th.

Oh, and before I forget, the discharge was something else indeed. Because my husband left Columbia headed to St. Louis before we knew we were going home for sure, he left in his tiny economical car as opposed to my RAV-4, which is much easier for me to get in and out of. I asked if there were some sort of medical transport available and was told there was, but that it was "prohibitively expensive." It took several question to the care coordinator before someone told me it would be approximately $2,000 to ride home in an ambulance versus sending my husband two hours back to Columbia to pick up the more appropriate vehicle, then two more hours for him to return to St. Louis to get me, then the two hour drive to get me home. I told them we had just signed paperwork saying we would pay $30,000 for bone morphogenic protein, so what's another two grand????? At this point, all I wanted was to get home and try to get some normal in my life.

more below.

jrnyc
11-27-2014, 10:40 PM
hi fifa
i am thinking you may not be up to writing for now...
but am sending you a private message...

hope u feel a little better every day...
jess...and Sparky

titaniumed
11-28-2014, 11:24 AM
Fifa, I see your posts are getting longer, which is a good sign.....

I hope you are eating.....I say this because on meds, eating can seem impossible. The body can barely keep up after major surgeries on a regular diet, this is why I say this....I only felt better after I addressed my nutritional needs.....I remember eating chicken soup. I think we are taught this in Kindergarten. (smiley face)

And I hope you are doing your walks......you know what I’m saying. I would go out and walk about 300 feet to my neighbors home, turn around and come back. I did this around every 2 hours......along with pacing in the house.

We were the same way with meds.....but for now, you have this careful medication balancing act you have to do and I know it sucks, but soon it will be over....

I found Zantac to work best for acid.....the regular strength, not the heavy duty stuff. Dry Granola is also good for this....I kept a box of it by my bed.

Ed

fifa
11-28-2014, 12:06 PM
Hi, Jess, Sparky, and everyone else - hope you all had a Happy Thanksgiving. (smiley)

I'm feeling okay today, but just okay. I think I'm simply overmedicated and I'm hoping a few of you can answer that or at least share your experiences if you're willing. By the time I was admitted to Boone Hospital here in my home town on the afternoon of 17th (I was discharged from Barnes on the Saturday the 15th), I was an absolute mess. I couldn't eat or hold down any meds, couldn't hold down any liquids, had nearly zero urine output, was passing no gas, etc. My abdomen was so rock-hard that it had a bronze-ish sheen to it. My large-ish sweatpants wouldn't go over my waist. Went to the ER where it was pretty quickly determined that I had an ileus. Took four nurses to start an IV - they kept blowing (obviously dehydrated). Their treatment for an ileus was nothing by mouth, which means the other end had to be treated. Believe me, at this point, it was FINE BY ME!!! LOL They loaded a full bag of fluids and nothing happened. Let's just say that they admitted me, and in a few hours, we had success, then more success, etc. (relieved smiley face). So, as best as I can figure, since the surgeon at Barnes prefers a candidate be on a clear liquid diet the Sunday before surgery, I hadn't had anything to eat since Jello Sunday night November 9th until baiscally last night. Everything remotely solid that goes in doesn't take much before I feel over-full. Instead of a basic packet of instant oatmeal, now it is a couple of tablespoons before I'm done. I'm a little afraid to eat right now. I mean, I'm hungy, but i'm just tired of dealing with the stomach stuff. For Thanksgiviging last night, my best hubby made my favorite thing in the world...vegetable risotto. I got about a quarter cup of that down before I decided I was in trouble, so I used a Fleet's enema to make quick work of that.

Okay, all you folks who don't mind talking about your bowels and/or your mental state (mine have been one in the same lately, obviously - HA!!!)

I put the oxycontin away. My local doctor discharged me from Boone with something that makes people a little less crazy than the oxy "Nucynta." No idea what it is and I haven't looked it up yet. The back pain, while terrible, seems less so than the "muscle spasm" pain. Yes, I've got the famous board nailed to the butt feeling and the not being able to sit up unless supported somehow thing. I feel like I want to lean against things. So, I'm getting this Nucynta and a couple of muscle relaxers (diazepam/Valium) that we already knew I could tolerate.

Here's today's big problem - this started last night. I have a big bad case of the bed spins. Not just a little vertigo - this literally makes me feel like I'm on the Tilt O Whirl or something. It seems to happen most often when I look up and to the left. Hubby is convinced this is my withdrawing from the Oxycontin. I'm trying to stay hydrated and will try to eat a little bit of something today. My walking is pretty good -I'm not using the walker as much as I was and the log rolling is much easier. I've showered and washed all the black matted crap out of the back of my scalp. All in all, not a bad day so far. Nothing sounds good to eat. Everything, even my beloved Diet Dr. Depper, tastes like aspirin or some kind of medicine to me.

Any and all advice appreciated from any of you. Will try to respond to you individually as I'm able. I'm still sleeping quite a bit - when I can. Insomnia is becoming a problem now, too.
Thanks to all of you for your support. Hope you are all well!!

Fifa

jackieg412
11-28-2014, 01:55 PM
Hi. Fifa, as rough as that all sounds to me it is like the same journey. I remember just being able to eat a single bit of food at a time.like one grape or a single potato. I was thirsty all of the time. And then it was a single sip of something. Sitting was impossible and I paced back and forth a lot. It will improve. A lot of rest yet. Even if you can't sleep for long. The spinning , I would think is coming from the meds. My surgeon just gave me a 2 mg dose of diazepam , I could not keep it down . Medication can help, but it can also be a trial and error type of thing. For me it is mostly error.

Susie*Bee
11-28-2014, 02:11 PM
Dear Fifa - I am so sorry you are going through all these problems. Some do and some don't -- and you just never know. The one thing to keep thinking of is that you will get through this. And I know you realize that. Just keep thinking it when it the going is rough. I'm one of the ones who had an ileus, and I can't remember if I already told you that or not. I went NPO, not even ice chips, for 5 days after surgery (not counting surgery day). I know it seems like you are without nutrition during that time but they are "feeding" you with the IV. (Sure doesn't take the place of a steak, does it!)

I also went through a time period where the room would spin around when I was lying down in bed, but it was at least a few months or more after my surgery and I wasn't on strong pain meds then... and also many, many times when I lay awake for hours during the night, wishing so much that I could just go to sleep. Sometimes those are med related, I think, as right now I'm having that same problem because my neurologist just added a different medication and if something awakens me at 4:00, or at least by 6:00, in the morning (a foot cramp, almost every night) I cannot fall back to sleep for the life of me. Up until I started this new med I could sleep in until 8:00 if I wanted to. Oh well. (sad face). The main thing to keep in mind is that these things will pass and you just need to be patient. It may be some sort of hold-over from your anesthesia also, or just the trauma of the surgery.

I'm praying that you'll turn the corner soon and get the rest you need, your digestive system back on track, that you'll be able to eat the foods you are craving, and that you'll be back on the smoother road of recovery very soon. I think you've just hit several bumps, the main one being that they did not take care of you well at Barnes and sent you home when they shouldn't have. Take care.

PeggyS
11-28-2014, 05:42 PM
Dear Fifa,

Things will settle down for you; it's waiting for that to happen that's so darn hard! I just can't believe how soon you were sent home - esp without eating solids & having a BM. I did receive a denial of coverage for my hospital stay from Sat-Monday. We weren't informed, but the dr knew I wanted to go to rehab. That had to be appealed,too. My ins did agree to pay for BMP, after a couple of appeals. Hopefully yours will too! It's unclear how much was actually used.

I'm glad there are people on the forum who can help you through this. I'm offering prayers for your back to heal, your gut to settle down and the correct combination of meds.

Please update us, as you feel up to it. Take care, my friend!

tae_tap
11-28-2014, 09:10 PM
Hey there FIFA! Glad to see your writing more, that is a good sign. Now on the topic of Nucynta, we have given this particular med to many of our post-op patients and have seen good results. But our patients are not fusion patients. From my understanding from the literature our med reps presented us with is that Nucynta reacts in the body like NSAIDS and aide in the reduction of inflamation while dealing with pain without the addictive nature. We have seen many pain doctors prescribing this med as well and have seen studies where after a certain amount of time it enhance sensitivity to pain (which is weird). It's only been out for post-op pain for about 2 1/2-3 years so there really are not many long term studies on it yet. But if it helps, great!

I understand the waking of the bowels. After my full fusion I did not get clear liquids (other than ice chips) till day 6. I was not on solids returning home and didn't feel like eating till almost a month out. It took a good three weeks before the constipation let up. Heck, this time was a lot less time under Anastasia and my system has finally woke up with the help of mag citrate. So even with less stress it took a week to want food and to wake things up.

It will get easier. I can't fathom being cut loose so fast and then ending up in Boone. Did you have an Ortho while at Boone or GP?

I am praying that things begin to ease up!
(((Hugs)))
Tamena

fifa
11-28-2014, 11:10 PM
Fifa, I see your posts are getting longer, which is a good sign.....

I hope you are eating.....I say this because on meds, eating can seem impossible. The body can barely keep up after major surgeries on a regular diet, this is why I say this....I only felt better after I addressed my nutritional needs.....I remember eating chicken soup. I think we are taught this in Kindergarten. (smiley face)

And I hope you are doing your walks......you know what I’m saying. I would go out and walk about 300 feet to my neighbors home, turn around and come back. I did this around every 2 hours......along with pacing in the house.

We were the same way with meds.....but for now, you have this careful medication balancing act you have to do and I know it sucks, but soon it will be over....

I found Zantac to work best for acid.....the regular strength, not the heavy duty stuff. Dry Granola is also good for this....I kept a box of it by my bed.

Ed

Hi, Ed. The problem is that nothing sounds good. Most things taste like melted plastic or perhaps a chewed-up aspirin. I am drinking though, but none of that tastes good, either. So far, the thing that tastes the best has been Bob Evans heat and eat mashed potatoes. That started today...about an hour ago.. I just haven't been able to keep anything in me for very long. Took awhile to get all the lactulose, suppositories, enemas, stool softeners, etc. out of my system.

I've been trying to walk, but hadn't been doing as much as I should because I've been kind of weak. Yesterday, during a moment of sheer willpower, I walked downstairs with my two-legged and four-legged boys. Can't tell you how nice that was. Puppo doesn't seem to understand where I've been but won't leave my side since I've been home. So, that's 14 stairs to the lower level and 14 back up to the main. It was plenty. LOL

Hope you're well. Thanks for your encouragement and support. I'll post more as I get stronger.

Fifa

green m&m
11-29-2014, 12:21 AM
I had severe abdominal pain in hospital and at home until maybe day 3 back home.

My abdominal pain was beyond the bloated pain was a very inflamed 'angry' pain. It felt food poisoning like pain and not just constipation related.

Eventually I came up with a theory (this may have been induced by hallucination from pain meds) that my body was over loaded with mast cells from the opiates... and my bowel was inflamed from all the mast cell/histamine reaction.

I wanted to take something for the itching anyway so I made my boyfriend go out and get me benedryl tablets, took 50mg to bed that night and woke up next morning with significantly less pain. Bowel function returned to near normal next day.

Most likely a coincidence, but over abundance of mast cells can cause problems in our body. So worth trying if your intestinal pain feels inflammatory and/or you have skin itching. I'd try before bed though as it can make you drowsy.

It took me a while for my taste buds to return to normal. For a while, everything tasted salty, even steamed veggies that were not seasoned in any way. Still salt sensitive which I guess is a good thing.

I had lots of soups -- only the liquid the first week back. I tried and wanted to eat solids but my body wanted nothing to do with it. Soup and smoothies kept me going. Also prune juice.

LindaRacine
11-29-2014, 12:30 AM
Hi Fifa...

Sounds like you're pretty much of a mess at the moment. I'm sorry that it's so difficult. I suspect that you were discharged from the hospital too soon, and now it seems like you're like a pinball. Do you have a primary care doctor, or even better, a pain doctor, who can take over your care?

I think it's a good sign that you're hungry. When you eat, eat slowly over a long period of time. Hopefully, that will cut down at least a little on that bloated feeling. By the way, risotto can be constipating in some people. Try fresh fruit. For some reason, that was pretty much the only thing that appealed to me after my first spine surgeries.

I had never heard of Nucynta, so I looked it up. One of the first things i read was "You should not use Nucynta if you have severe breathing problems, or a bowel obstruction called paralytic ileus."

Hang in there. This will all get worked out. I hope it's sooner rather than later.

Regards,
Linda

fifa
11-30-2014, 01:18 PM
Hi. Fifa, as rough as that all sounds to me it is like the same journey. I remember just being able to eat a single bit of food at a time.like one grape or a single potato. I was thirsty all of the time. And then it was a single sip of something. Sitting was impossible and I paced back and forth a lot. It will improve. A lot of rest yet. Even if you can't sleep for long. The spinning , I would think is coming from the meds. My surgeon just gave me a 2 mg dose of diazepam , I could not keep it down . Medication can help, but it can also be a trial and error type of thing. For me it is mostly error.

Hi, Jackie -

It seems in retrospect now that the bed spins were probably most likely related to being dehydrated. I pushed as much fluid as I could, and it took two days, but I'm happy to report that it has gone away (knock wood). The feeling is hard to explain, but it is as if I were tied to a spit that got turned very quickly - that rolling down a hill feeling if you ever did that when you were a kid. It happened so fast that it was instant sick-making... all I could think about was I have to get prone now. I counted up the days, and it was something like 19 days with maybe a bowl of Jello, some ice chips, two frozen sherbet cups, and very little else except sips of water with meds. A lot of what I took in came back up because of the ileus. Anyway, in doing some reading about dehydration, I think this was the problem.

I've started to eat again, but it seems like only very small amounts are working best. I'm trying to eat lots of veggies and fruit so not to tax my gut so much. The very best thing I've found so far is tea with sugar and soy milk (I don't drink regular milk). I think several cups of that turned me around. Oh, and I drank a cup or two of prune juice, and even though I love the stuff, probably won't do any more large quantities of that. The acid of fruit juice has been hard for my bits to handle. LOL

Thanks for writing - I certainly would appreciate any and all advice! Thanks!

Fifa

PeggyS
12-03-2014, 10:02 AM
Hi Fifa!

Just checking in to let you know, I think about you everyday & I'm sending prayers for steady recovery.
Love your sense of humor: bowels & mental state being one in the same! I can certainly identify!
I'm impressed: a whole flight of stairs - good for you!

Take care!

jrnyc
12-03-2014, 03:04 PM
Fifa....i read the same thing Linda Racine mentioned...
that Nuycenta should not be taken if an ileus is present...
perhaps you should double check it with the doc who
prescribed it....????

as others have written, i am so so sorry you are suffering
so and i hope things calm down and quiet down every way
possible, for your poor body to rest, heal, and get some
nutrition....i am sure not being able to eat food is contributing
to feeling weak....and i think Linda is right to say you were
discharged too soon....
a referral to a pain doctor....by your surgeon or GP...might
help, as Linda also mentioned....
there should be a doctor just concentrating on trying to get
you relatively comfortable, if there is such a thing right now, in
terms of the pain you are dealing with...while having the knowledge
of how meds will impact your gastrointestinal tract.

thoughts and prayers...
and a hug and a woof....
jess...and Sparky

fifa
12-04-2014, 10:57 PM
Hi, Leah -

This made me laugh out loud! I read this several days ago at work, but I didn't have a chance to respond. That. Is. HILARIOUS!

Thanks to you and a couple of others, I asked the physician assistant about getting the pain meds before we leave the hospital, and she assured me that they would take care of that. So, thank you! I'm also going to ask for a shot or something for the ride home. It will be the one time I can relax while someone else is driving. LOL

I hope you and everyone else will share their funny stories with me. The humor really helps!

Take care - hope you are doing great!
Fifa

Hi, Leah -

I just had to post this while I was thinking about it - had you in mind when it happened on several (more like NUMEROUS) occasions. One day, I'll make a list of them and post them here, just for laughs.

Anyway, I wanted you to know that I had my phone with me and texted several people. Took some pictures, too. I was SO out of it (like two oxycontin every four hours whether I needed them or not) that I had no idea what day it was, what time of day it was, etc. Long story short, I texted a LOT of my buddies at apparently all hours of the day and night. They are all quite amused by this, but I was appalled to find out that I had done this. LOL I texted my cousin around 4:00 a.m. one morning asking her if she would mind stopping by to feed the fish. Uh, we don't have any fish. No idea what I was thinking about or what I was actually trying to say. Anyway, they were all actually very happy to hear from me and didn't care what time of the day it way. Again, I'll put a list together soon just for our own amusement. I texted my husband so many things that he couldn't understand...so many misspelled words, incomplete thoughts.

Oh, and the best part? Well, to me, anyway. You'd have to know us to understand out completely warped sense of humor, but my husband had been sneaking around taking pictures of me in the weirdest positions. You don't know how many pics I have now of me playing Battleship on Wii but having fallen asleep with the remote in my hand, still pointed at the television.

Maybe hubs and I are just weird, and maybe it is because I'm starting to feel a little better, but this stuff is making laugh (when there's been little to laugh about lately).

Hope you are doing well - was thinking of you and thought I would say hi. (smiley)

fifa
12-04-2014, 11:08 PM
Hope that you are finally settling in at home. Sending you healing and good bowel movement messages.
Susan

Hi, Susan -

The bm messages helped more than you know. I'm taking not only a Senokot laxative daily but also a Dulcolax stool softener daily. Thought I was developing another ileus a few days ago, but apparently things (knock wood) are starting to normalize.

I will say, though, that I'm going through some really emotional upheaval that has been hard to deal with, and I'm pretty sure it is the drugs. I'm typically on a pretty even keel, but lately, the dumbest things are making me cry. Not just a tear or two, but downright heaving sobs. I'm crying kind of a lot and pretty much for no reason. The other day, I opened a small bag of dog snacks and the bag split apart - thousands of teeny tiny dog treats all over the floor. Had to call hubby in to pick them up before the dog had snarfed them all. Well, that send me into about an hour's worth of sobbing. Also, an this is new today, I'm starting to get a little pissy. Like irrationally pissy. For now, anyway, I'm blaming the drugs.

I should mention that this week they changed the Oxycontin over to Percocet (I don't know the dosages off hand) and also have me on Valium 10 mg (diazepam). That, the laxative, and the stool softener is all I'm taking.

If any of you have any similar experiences and/or any advice to share, I should would appreciate hearing your stories.

Thanks - love and gentle hugs to all.
Fifa

leahdragonfly
12-05-2014, 07:58 AM
Dear Fifa,

I don't think your emotional state is out of the ordinary at all this early in recovery! I agree the drugs can mess with your head and moods a lot, which doesn't help things. Right now you are in survival mode…you have just within a matter of days gone through likely the most traumatic medical event in your life, the closest thing to dying you have experienced. It is just extremely traumatic, the stress, fear, pain, uncertainty, sleeplessness, lack of medical support being booted out of the hospital way to soon, etc. I can completely relate to how you are feeling right now, and I can promise you it will pass.

I really think there is some sort of post-traumatic stress component to this recovery that is rarely discussed, even here. I was somewhat disoriented and delusional in the hospital a couple days before discharge and thought the mean male nurse from ICU was now working in my ortho area and I was afraid he was going to come kill me during the night. I clearly remember these thoughts, and my husband had to go talk to the nurses so he and they could reassure me. I also had a couple of really rough nights in the hospital, probably day 2 and 3, where I was so sick and in so much pain with no nurses in sight that I thought I might literally die. It was terrifying. Once I got home I had some panicky feelings about how my new back felt that were difficult to cope with. I remember walking slowly outside into the moonlight on a cold clear night to look at the stars, and imploring the sky to give me the strength and ability to cope with my situation. I felt so helpless and defenseless. My point is the first few weeks of recovery are hell, the meds don't agree with everyone, and these difficult emotions bubble up to the surface.

What helped me was the passing of time, keeping in touch with friends and family (it always lifted my spirits),and giving yourself permission to experience and process all of these feelings so you can gradually heal. Take it easy and get the very best nutrition you can manage. Drink plenty of fluids, and know this all will improve. Many of us here know how you feel, and we are here to listen. Please post again soon.

Gentle hugs,

Gayle

jackieg412
12-05-2014, 01:49 PM
I agree with Gayle, there is a lot of trauma with this surgery and recovery is long and hard. We're in an instant society. We expect more from ourselves than we can manage. Also, as good as family and friends are at first, they do not understand and get tired. Thankfully most will never go through this ----so vent here. We understand!

susancook
12-05-2014, 01:54 PM
FIFA, I had the same emotional reaction after surgery that you describe! My very kind husband had no idea what to do with me. I cried over very small events....like the tears were there just waiting for my emotions to be triggered. Gayle has great suggestions. I'd like to add a few:
- Tell the people that care for you that people on the forum say that it is normal, due to a combination of the enormity of the surgery, the non-supportive time after surgery and your frustration with how you were treated, the drugs you take, pain, sleep deprivation or no period of sleep of 6 hours continuously....and that the crying really isn't about the situation and IT IS NOT ABOUT THEM. Tell them the reaction to your crying that works best for you: like just a quick hug and don't ask why you are crying or whatever works for you. Also, recovery is a good year.....some family/friends think that you should be "normal" after 6 weeks. It gradually gets better over the first 6 weeks, then 3 months, then 6 months, 9 months, one year. Also, sometimes it gets better and then you feel worse...emotions do not just get better every time, so don't get disappointed when you have a setback.
- Do you have someone to talk to that really listens and supports you?
- Don't over think the crying. It just happens and will decrease with time as your pain.
- Reach out to good girlfriends and invite them over to your home....and tell them not to stay too long.
- Get out of the house for even a short while....lunch is great, whatever works for you. Fresh air. Remember a pillow to cushion your back in the car. Of course, you are the passenger.....no driving yet!
- Walk as tolerated every day
- surround yourself with non-toxic people
- is your bed comfy? Favorite chair comfy? If not, change with a topper or more pillows. New sheets. Soft flannel sheets from LL Bean (supima sheets)...think that they have a discount now and always take back returns.
- is your pain being addressed?
- constipated?
- look at self-care options: hair cut, pedicure, manicure, foot and lower leg massage. Do not do a body massage.
- are you taking a nap every day?
- are you eating well? Fresh fruit, veggies, lean proteins
- are you drinking enough water?
- if you have a dog, hug her more!

I promise, promise, promise that life will get better. Give it time. Have patience. Be kind to yourself. Be very kind to yourself.

Gentle caring hugs,
Susan....been there done that, just did that again.....

fifa
12-06-2014, 05:10 PM
Hi. Fifa, as rough as that all sounds to me it is like the same journey. I remember just being able to eat a single bit of food at a time.like one grape or a single potato. I was thirsty all of the time. And then it was a single sip of something. Sitting was impossible and I paced back and forth a lot. It will improve. A lot of rest yet. Even if you can't sleep for long. The spinning , I would think is coming from the meds. My surgeon just gave me a 2 mg dose of diazepam , I could not keep it down . Medication can help, but it can also be a trial and error type of thing. For me it is mostly error.

Thanks, Jackie - very helpful. I think we've figured out that not only was I over-medicated, i was completely dehydrated. I'm not using the walker a whole lot these days, so am still kind of unstable without it. I've just never had anything like the vertigo I had there for a couple of days. I mean, I've been "tipsy" plenty and dizzy, too, but this felt more like being almost flung to to the floor. I knew if I didn't get to my knees, I was going to black out. Weird. Happy that is over.

Hope you are doing well - thanks a bunch!
Fifa

fifa
12-06-2014, 05:33 PM
Dear Fifa - I am so sorry you are going through all these problems. Some do and some don't -- and you just never know. The one thing to keep thinking of is that you will get through this. And I know you realize that. Just keep thinking it when it the going is rough. I'm one of the ones who had an ileus, and I can't remember if I already told you that or not. I went NPO, not even ice chips, for 5 days after surgery (not counting surgery day). I know it seems like you are without nutrition during that time but they are "feeding" you with the IV. (Sure doesn't take the place of a steak, does it!)

I also went through a time period where the room would spin around when I was lying down in bed, but it was at least a few months or more after my surgery and I wasn't on strong pain meds then... and also many, many times when I lay awake for hours during the night, wishing so much that I could just go to sleep. Sometimes those are med related, I think, as right now I'm having that same problem because my neurologist just added a different medication and if something awakens me at 4:00, or at least by 6:00, in the morning (a foot cramp, almost every night) I cannot fall back to sleep for the life of me. Up until I started this new med I could sleep in until 8:00 if I wanted to. Oh well. (sad face). The main thing to keep in mind is that these things will pass and you just need to be patient. It may be some sort of hold-over from your anesthesia also, or just the trauma of the surgery.

I'm praying that you'll turn the corner soon and get the rest you need, your digestive system back on track, that you'll be able to eat the foods you are craving, and that you'll be back on the smoother road of recovery very soon. I think you've just hit several bumps, the main one being that they did not take care of you well at Barnes and sent you home when they shouldn't have. Take care.

Oh, Susie Bee - could you possibly be any nicer? Thank you for your kind words. (big smiley face)

I've figured out with me (maybe with you and with others?) - it is just the not knowing. I've been driving myself crazy the last couple of weeks wondering "is this normal? Should this be happening? What the h*LL is this all about?" That's why I'm so grateful to have found you all.

I keep trying to tell to myself that this, too, will pass. There are plenty of you all you've "been there and done that" and you all seem to be doing pretty well. I'm controlling and impatient, and I try to work on being a better person, but it seems like Percocet, Valium, and Oxycontin make my bad personality traits worse. LOL

I had surgery November 10th, so I keep trying to tell myself that it hasn't even been a month yet, and I need to just eat, rest, and relax. There's nothing I want to read, no real comfortable position I can get into, and I think I've watched everything that has ever been broadcast on Netflix.

The yoga isn't helping - I think it is the drugs. Someone should do a study on that one. LOL Who needs Zen when you've got Oxycontin? LOL

These are today's complaints and they, too, will pass. You and so many others have been through so much more than what I'm going through. I' sorry to be a whiner. I'm going to post below about "nerve pain" and then try to get some sleep. I'm going through this insomnia thing - it is as if the Percocet wakes me up every two or three hours on the dot and says, "hey, time to take some more of me!" That's kind of different. LOL

Please take care. I hope you are doing well - gentle ileus-free hugs from Missouri to you! We'll have to swap private stories on that one - I have NEVER been through anything like that before. I've got hubby on standby with the Fleet enemas just in case. I seem these days not to be able to tolerate even half of what I could eat before. Oh, and I'm down 24 pounds, but don't know how many pounds of hardware they added.

Take care and get better than ever! (smiles and hugs)
Fifa

fifa
12-06-2014, 08:24 PM
Hi, everyone -

Just a quick question for anyone who may have had issues with this. I had surgery on Monday, November 10th, so just shy of a month ago (today being December 6th).

Yesterday and today, everything from the waist down just aches. I haven't done anything in particular any different than I have been for the last month. Haven't fallen, bent, lifted, twisted, etc. I'm walking sort of like I'm supposed to. It's too cold here right now for me to go outside, but I was told to take six or eight five minute walks per day such that it added up to about 30 minutes per day. I'm not doing any sitting really except the occasional trip to the toilet.

Anyway, yesterday I just ached everywhere from about the beltline down. No upper body problems at all. Not that I have any experience with restless leg syndrome, but in my mind that is what it feels like. When I'm lying in bed, I feel the need to keep my feet and legs moving. It isn't really "pain," especially when compared to all the other pains we've all had or been having. This is more like a burning ache. It's different from the "board nailed across the butt," which I've mostly gotten used to. I haven't had the "itchy back" that I've heard some of you complain about. This is just weird - feels like my legs are weak and they just hurt from the hips to the toes.

Any ideas? The pain medicine doesn't seem to help this much, which is why I think it might be nerve pain and not muscular/incisional.

Hope you are all well. Any and all advice/comments are appreciated. (smiley)
Fifa

PeggyS
12-07-2014, 09:09 AM
Hi Fifa!
How is your lower body today? I think our nerves & muscles respond in a variety of ways as they're learning to adjust to our new spines.

I'm on a small dose (10mg 1x a day) of gabapentin for nerve pain. It was prescribed in rehab to supplement my pain med, hydrocodone. I get that sudden urge to move my legs and hands while I'm sleeping or resting. It's annoying, not really painfully. I can increase the gabapentin, but I'd rather not - I've heard it's hard to quit.?

Hope you have a good day!

titaniumed
12-07-2014, 12:25 PM
The pain medicine doesn't seem to help this much


Our bodies build up an immunity and many that are on their meds realize that they are just SO nasty......This seems to happen around the 6 week mark and then the question arises “How do I get off these meds?” After all, it is a goal. I would say that most 50 yr old adults terminate medications around 8 weeks on average.....this only after reading a million posts. Oral medications are overrated and don’t compare to the injectable meds at the hospital. But we need them.....Our double edged sword.

I ended up at that point and figured that continual usage wasn’t for me so I quit. It took a lot of determination and the pain shot through the roof for a few days. I made an attempt and didn’t make it, called my surgeon and was told to cut the Percoset in half with a knife. A week later I tried again and made it. 03/14/08. It was around 3 days of hell, then started my smoothies and jamming NUTRIENTS and improved quickly. I was taking 5 hot soaks per day in a large deep tub with the water at 106 degres F. I was drinking plenty of WATER, flushing my cells. The hot soaks went on for exactly 3 months.

Many of the ladies here have reported taking Gabapentin. I wasn’t prescribed Gab for my surgeries but had it prescribed for my neck herniation’s years later and felt that it was too strong and didn’t like it. Nerve pain can take a long time to resolve.....These inflamed areas can be stubborn, but they do heal in time.

Always call your surgeon upon cutting medications. Don’t cut medications without permission.

I remember sitting here one day at 4 months and reported not feeling any pain. I couldn’t believe it, it had been decades since I was pain free and it actually took a long time to get used to. The pains did come back and it was a see-saw sort of recovery pushing the limits and triggering off pain and then taking naps to recover. Recovery is about having more better days than bad, and the scales of pain tip in our favor in time. It helps to understand this healing process.

9-10 electrical burning pain should be reported to our surgeons......This feels like sticking your finger in a lamp socket. The sunburn feeling on my hips due to flouroscopy burns took around 2 months.....

It helps to understand the whole process....and its not an easy thing mentally especially after being hit by a train. It takes patience, for sure. That’s why I end many of my posts with....

Hang in there
Ed

LindaRacine
12-07-2014, 01:53 PM
Hi Fifa!
How is your lower body today? I think our nerves & muscles respond in a variety of ways as they're learning to adjust to our new spines.

I'm on a small dose (10mg 1x a day) of gabapentin for nerve pain. It was prescribed in rehab to supplement my pain med, hydrocodone. I get that sudden urge to move my legs and hands while I'm sleeping or resting. It's annoying, not really painfully. I can increase the gabapentin, but I'd rather not - I've heard it's hard to quit.?

Hope you have a good day!

My immediate thought was to try gabapentin if you have any.

fifa
12-10-2014, 05:16 PM
Dear Fifa,

Things will settle down for you; it's waiting for that to happen that's so darn hard! I just can't believe how soon you were sent home - esp without eating solids & having a BM. I did receive a denial of coverage for my hospital stay from Sat-Monday. We weren't informed, but the dr knew I wanted to go to rehab. That had to be appealed,too. My ins did agree to pay for BMP, after a couple of appeals. Hopefully yours will too! It's unclear how much was actually used.

I'm glad there are people on the forum who can help you through this. I'm offering prayers for your back to heal, your gut to settle down and the correct combination of meds.

Please update us, as you feel up to it. Take care, my friend!

Hi,

I can't remember if I answered this or not and am too tired to hunt it down. LOL You all have been an invaluable to me resource to me and everything has been easier for me because of every one of you! Your prayers are working!

Things do seem to be settling down a bit. Really, all I want to do is sleep or at least lie in bed and play a game or two. My stomach has settled down finally. I still can't eat much and really don't want hardly anything. Hubby will fix a plate of something, not remembering that about a quarter of a plate of something is more than I can handle. I'm taking stool softeners as prescribed once daily, but my old habit of having a daily bm seems to be over. I'm keeping an eye on it, but every fifth or sixth day, I'm taking a Dulcolax laxative and hoping for the best. It seems my habit now is about once a week, which probably makes sense because there isn't much in there to eliminate. Sorry for the "graphic" images. (unsmiley grossed-out face).

I've got a stack of mail on the kitchen table that I haven't touched yet. Reading seems to be difficult for me at present. I find myself reading the same sentence over and over again and it still doesn't make any sense. Maybe some kind of drug-brain disconnect. I have no idea what Barnes will pay for as far as the BMP. I had checked in with my financial person at Barnes (Beverly) a few weeks ago. She said she had not yet received my financial paperwork in the mail yet (I sent it snail mail) but that this was not uncommon because Barnes is a huge place and there is a lot of mail received that has to be sorted and delivered. She asked if I would scan it and send it to her electronically, and I never answered that question, but an emphatic NO would have been my response. Too many people these days (especially in health care) work from their phones, answer e-mail from their phones, etc. I didn't want my full financial forms with income, DOB, SS #, etc. all out there on somebody's phone so they could have their purse stolen and have all my information. I think it is crappy the way the health system works these days, and I'm not taking any chances with my personal info.

Speaking of the health care system, last I heard was that Medicare reimbursements were going to be divided up between the hospitals with the best quality of care. This is too much to go into in this particular e-mail, and others may want to chime in, but basically, if you are a crummy hospital providing crummy service, you'll receive less Medicare reimbursements that you will if you are a top-notch hospital. In my town, where there are two main huge hospitals, plus a children's hospital, plus a VA hospital, plus a Rusk Rehab and a Landmark "rehab" hospital, they are all following "Obamacare," and they all have to send you a survey to fill out after you've had a visit. if you don't receive it, contact the hospital and have it sent to you. Hospitals now are being judged on their quality of care, including their rate of infections, rate of readmissions (like being sent home with an ileus only to be readmitted two days later), etc. They want to know how happy you are with the job the hospital did. If you receive this, FILL IT OUT. The hospitals with the worst ratings someday will be eliminated - who would want to go there? The results are public and just one of the many first steps that hopefully will be taken to crack down on this racket.

Must be time for another happy pill - nothing gets my goat like good people being taken advantage of, being ill informed, etc.

Hope you are well - I hope to call you soon!
Fifa

fifa
12-10-2014, 05:39 PM
Hey there FIFA! Glad to see your writing more, that is a good sign. Now on the topic of Nucynta, we have given this particular med to many of our post-op patients and have seen good results. But our patients are not fusion patients. From my understanding from the literature our med reps presented us with is that Nucynta reacts in the body like NSAIDS and aide in the reduction of inflamation while dealing with pain without the addictive nature. We have seen many pain doctors prescribing this med as well and have seen studies where after a certain amount of time it enhance sensitivity to pain (which is weird). It's only been out for post-op pain for about 2 1/2-3 years so there really are not many long term studies on it yet. But if it helps, great!

I understand the waking of the bowels. After my full fusion I did not get clear liquids (other than ice chips) till day 6. I was not on solids returning home and didn't feel like eating till almost a month out. It took a good three weeks before the constipation let up. Heck, this time was a lot less time under Anastasia and my system has finally woke up with the help of mag citrate. So even with less stress it took a week to want food and to wake things up.

It will get easier. I can't fathom being cut loose so fast and then ending up in Boone. Did you have an Ortho while at Boone or GP?

I am praying that things begin to ease up!
(((Hugs)))
Tamena

Hi, Tamena -

SO NICE to hear from you. I'm finding out very little about this drug, so I'm happy to have the info you sent. Thank you! How are you doing, by the way? Are you all fixed up now? I've been praying for you, but for some reason thought your surgery was the Monday after mine (the 17th). My brain has not been the most reliable lately. LOL

No, I called my primary care physician's office and told them what was going on (we've had a 25+ relationship, about 22 of those I worked with him and another 10-15 where I was his patient). Anyway, we know each other pretty well. Told them I was fairly certain I had an ileus an was in enough pain and my belly was so large that I didn't think I could double over to even get in the car. We called an ambulance. They tried to treat me as an outpatient there in the ER, but after six or seven hours of that, it was obvious nothing was going to "move," to they went ahead and admitted me.

Let's just say I'm less than happy with our orthopaedic options here. I might try someone at the University someday, but I doubt it.

I pray everything is going your way and you are doing well. Please keep me posted on your progress.

Also, I meant to ask you this earlier - after your ileus and that, did you find that you had a intolerance for specific foods? I've find very little right now that is satisfying for me to drink, and am basically just drinking water (which I kind of hate). (smiley) I can't drink anything carbonated at all. My beloved Dr. Pepper - how I loved you! (sad face).

Seriously - is anyone out there not able to drink/eat the things they liked before surgery (or perhaps before ileus)?

Thanks. Hope you are taking care and feeling great!
Fifa

LindaRacine
12-10-2014, 10:42 PM
Hi Fifa...

A few thoughts...

At UCSF, emails and other electronic communication to and from patients, and any communication containing any personal health information about a patient, are all encrypted, as are all devices that can store data. Email software does not work on our phones, iPads, etc., unless they are password protected. I suspect that's the case for most if not all university medical centers, and hopefully most private institutions. If not, they are not in compliance with HIPAA.

Also, in regard to your bowel regimen, I think you should consider taking both senna and colace daily. I was told to continue them as long as necessary, and definitely as long as I was taking narcotics, even if I wasn't feeling particularly constipated. On top of that, if I started feeling constipated, I would take lactulose. I don't think you want to be going so long in between bowel movements.

Hang in there. It will get easier.

--Linda

tae_tap
12-11-2014, 11:23 AM
Fifa,
I am doing really good! I am still taking Senna for the stomach issues because it normally takes me a good three months to get back to normal. Your surgery was so much more of a shock to the body so don't get discouraged. It takes time to build up energy and to get back to normal. There were many foods that also did not agree with me after surgery, including soda of any kind. I was pretty much on apple juice, smoothies, and water.

Walking as much as you can will help to get the system running again too. I am glad to see you on here because that means you are slowly coming along and are about to winthis battle.

Have a great Christmas!

Tamena

fifa
12-13-2014, 02:23 AM
I had severe abdominal pain in hospital and at home until maybe day 3 back home.

My abdominal pain was beyond the bloated pain was a very inflamed 'angry' pain. It felt food poisoning like pain and not just constipation related.

Eventually I came up with a theory (this may have been induced by hallucination from pain meds) that my body was over loaded with mast cells from the opiates... and my bowel was inflamed from all the mast cell/histamine reaction.

I wanted to take something for the itching anyway so I made my boyfriend go out and get me benedryl tablets, took 50mg to bed that night and woke up next morning with significantly less pain. Bowel function returned to near normal next day.

Most likely a coincidence, but over abundance of mast cells can cause problems in our body. So worth trying if your intestinal pain feels inflammatory and/or you have skin itching. I'd try before bed though as it can make you drowsy.

It took me a while for my taste buds to return to normal. For a while, everything tasted salty, even steamed veggies that were not seasoned in any way. Still salt sensitive which I guess is a good thing.

I had lots of soups -- only the liquid the first week back. I tried and wanted to eat solids but my body wanted nothing to do with it. Soup and smoothies kept me going. Also prune juice.

Hi,

I hadn't thought about the mast cells and the Benadryl, but that sounds like very much worth checking into. I noticed something tonight, which may or may not be related. I've had some pretty awful acid reflux, which I typically treat just as needed with over-the-counter tablets of Pepcid Complete. I don't have the bottle in front of me, but I know that it is a combination of famotidine (Pepcid), calcium, and magnesium. It's claim to fame (if I remember correctly when it first came out) was that it gave you the long-term relief of a Pepcid plus the short-term relief of a Tums or Rolaids. Anyway, I've been using the stuff for years.

I've noticed the last couple of nights when I've taken it, I start with the severe stomach pain and cramps, which brings on the tears, and then this horrible ache (deep ache) starts from about the waist down and goes down to both feet. It feels like what I suppose "restless leg syndrome" feels like. I can't stop moving them. The pain just kills and there isn't anything to do about it. Oh, and they also make me feel like I'm going to be sick. I've just started researching on the internet, but one thing I found was that that is a reaction to Pepcid Complete and the muscle relaxant I'm taking (Tizanadine), which is Zanaflex. How stupid of me - I always check for drug interactions with prescription meds, but I rarely look into "Gee, should I take my Pepid Complete with these muscle relaxers???" What. An. Idiot.

Anyway, I don't know if that is what the problem is or not, but I'm about done. I'm not trying to be a hero or anything, but I'm just pretty sick and tired now of all of this. One drug relieves your pain but then you can't poop. Another drug relaxes your muscles, but makes everything you eat taste like alka seltzer. We've cut way back (WAY back) on the meds that I'm taking, with the doctor's approval. I don't feel like I'm getting the nutrition I need to heal if I can't eat anything. If my gut stays so full of whatever that I can't put in any good stuff, it just seems silly to me. Unfortunately, because mostly the drugs and being so loopy an unstable, I'm not walking as much as I should, and I KNOW I need to that. I'm tired of sobbing all the time for no reason. Just the other day, I opened a bag of teenie dog biscuits for teenie dogs called "buddy biscuits" or something like that. There are about a thousand tiny treats in an average size bag. Anyway, I ripped into them, not realizing that my husband had already opened them. I had g-damned buddy biscuits EVERYWHERE. The water dish was full of them. They covered the kitchen, the living room, and the hall. I had to get my husband to come clean that up for me - can you imagine picking up a thousands damned biscuits the size of a nickel with a reacher/grabber? I was just so upset. These are the things that, a month or two ago, would have reduced me into hysterical laughter, racing the dog to see who could grab how many the fastest. LOL So, suffice it to say, I'm tired of being sick, feeling depressed, being worried, and all the rest of that crap. I want to see how many of these meds I can get rid of and just maybe use PRN instead of around the clock. My dad is having surgery on the 16th, and I just want to be able to hang with him if I can. We'll have walker races down the halls or something. What I'm trying to say is that something needs to give and give SOON, because I'm at that stage where I can't believe that I feel this way and I'm wondering if I made the right decision. I just desperately need to move forward.

Thanks, you all, for letting me vent. You all take care - sending you giant hugs from afar!
Fifa

fifa
12-13-2014, 02:44 AM
Dear Fifa,

I don't think your emotional state is out of the ordinary at all this early in recovery! I agree the drugs can mess with your head and moods a lot, which doesn't help things. Right now you are in survival mode…you have just within a matter of days gone through likely the most traumatic medical event in your life, the closest thing to dying you have experienced. It is just extremely traumatic, the stress, fear, pain, uncertainty, sleeplessness, lack of medical support being booted out of the hospital way to soon, etc. I can completely relate to how you are feeling right now, and I can promise you it will pass.

I really think there is some sort of post-traumatic stress component to this recovery that is rarely discussed, even here. I was somewhat disoriented and delusional in the hospital a couple days before discharge and thought the mean male nurse from ICU was now working in my ortho area and I was afraid he was going to come kill me during the night. I clearly remember these thoughts, and my husband had to go talk to the nurses so he and they could reassure me. I also had a couple of really rough nights in the hospital, probably day 2 and 3, where I was so sick and in so much pain with no nurses in sight that I thought I might literally die. It was terrifying. Once I got home I had some panicky feelings about how my new back felt that were difficult to cope with. I remember walking slowly outside into the moonlight on a cold clear night to look at the stars, and imploring the sky to give me the strength and ability to cope with my situation. I felt so helpless and defenseless. My point is the first few weeks of recovery are hell, the meds don't agree with everyone, and these difficult emotions bubble up to the surface.

What helped me was the passing of time, keeping in touch with friends and family (it always lifted my spirits),and giving yourself permission to experience and process all of these feelings so you can gradually heal. Take it easy and get the very best nutrition you can manage. Drink plenty of fluids, and know this all will improve. Many of us here know how you feel, and we are here to listen. Please post again soon.




Gayle

I agree, Gayle, about the PTSD component to this. Someone else said lately (maybe it was Ed?) that it is basically coming pretty close to dying. I have to agree with that, too, with just one caveat that I saw my dad have a quintuple bypass, and seeing him on all the machines, with the heart/lung machine filtering his blood and the respirator breathing for him, that was pretty darned close, too. However, after that kind of heart surgery, they tell you right up front that depression afterward is a huge component of that. So yes, I agree, this surgery is just MAJOR and why wouldn't it take us months to recuperate?

Here's what I've decided - maybe it helps you or doesn't, but here's what I'm doing. I'm going to spend the next couple of weeks writing Christmas cards, and that's it. My family isn't buying any presents this year because we already have plenty to be grateful for. Two of us can't travel, so unless I can make it to my parents house for Christmas kisses, we won't be seeing each other this year. As many follow up appointments they will have down here after his surgery, we will see each other plenty. We'll celebrate when we all feel better. We're all just going to relax, hole up at home (hopefully with a Christmas cookie or two), and just be grateful to be here. No one in my family needs any more stress. This is a tough time of year for me an my parents anyway - my only brother passed away four years ago December 1st (he was 50 and diagnosed with Stage IV colon cancer by the time they figured out what was going on with him. He was diagnosed July 16th and died December 1st). So, no matter how much utter complete CRAP your life is, if you think about it, you can pretty much always think of someone who would trade places with you, given the chance.

Sorry to be so maudlin - I'm coming down off the Percocet. Next emotional outburst - irrational anger! LOL

You all take care of yourselves. I appreciate every single one of you and thank you for your great advice and listening ears. Oh, and smart-ass comments are ALWAYS welcomed here. (smiley)

Fifa

Susie*Bee
12-13-2014, 07:22 AM
Fifa - that sounds like a very peaceful way to celebrate Christmas. And the best way for you and your father to keep the stress levels down and continue with your recoveries. I am so sorry about your brother's passing... it is difficult to lose a loved one at an early age and as you know it helps put life in perspective. Yes, you've been hit by a Mack truck with your surgery and then got a double whammy with your extra difficulties, and then had your concerns about your father. You've been through so much. Right now you need time to have some peace and quiet and build your spirit back up as you recover. You are being very smart about Christmas. (big smiley). Cherish all that you hold dear and let all the hooplah go. Sometimes when we go through life-altering difficulties, it helps us get a different perspective. I was 20 years old and engaged when I was diagnosed with melanoma... a very bad cancer. I have cherished each birthday since (I am 63 now) and the fact that I am happily married (43 years!), was able to have three wonderful daughters and now have three delightful grandchildren -- 2 little boys aged 5 and one granddaughter who is 10 months old. I am about to go with hubby to spend Christmas with them all. Two of the families live 1,000 miles away from me in separate parts of the US, so I am very excited indeed. Life brings its ups and downs, but even through all of those, I have felt truly blessed because at least I have had LIFE. God has blessed me abundantly. You have a Merry Christmas, relaxing and enjoying a relaxing time.

LindaRacine
12-13-2014, 12:49 PM
Hi Fifa...

I'm so sorry this has been so difficult. I think many of us can relate. I certainly can. Hopefully, when you look back on this time, you'll realize it wasn't nearly as significant as it feels right now.

Up until my surgery in 2011, I had only had a tiny bout of depression during a serious illness. The depression in 2011 was pretty deep. I really felt like I didn't want to live. It's ridiculous when I look back on it now. I had zero back pain. I did have hip pain (from trochanteric bursitis) and a lot of numbness and tingling in my legs. I couldn't lie down for more than a few minutes for about a month. I was taking several narcotics, though I look back now and know that they really weren't helping. It all added up, and I was pretty miserable.

You will get past the issues that you have now. Hang in there.

Hugs!
--Linda

susancook
12-13-2014, 04:40 PM
FIFA....is that your name? It has such a positive sound to it,

Your post was brutally honest which I greatly appreciate. My recovery from my recent spinal cord injury has been challenging (deleted profanity) with disappointment and frustration. While I read so many entries by forum members who are doing well, most of me that feels like crap that I am "one of the chosen" to have complications. While I cheer for those that are doing so well, I really, really, really want to be doing well. Call it jealousy, call it disappointment. I want to be on the winning team!....not sitting in this wheelchair wishing that I could tour Puerto Vallarta, Mexico on my 3 week vacation here.

Your recovery clearly was not the usual. Your comment that "sometimes you wish that you had not done the surgery" almost brought me to tears. It is difficult to feel good about your surgery when you always feel like crap and whatever you do doesn't seem to work. That's how I felt during my first hospitalization this summer when in spite of having what I thought was a great medical team, nobody could figure out what was wrong with me when I could not move my legs. Then, finally after my surgery, my progress has been phenomenally slower than I would like it to have been. My favorite picture is the one of 2 buzzards sitting on a branch and one says to the other, "Patience, my ass. I want to go out and kill something".

Here comes the pep talk: I promise, that it will be better. I encourage you to seek the help of your regular provider with all of your non-spine symptoms and your spine MD for back problems. Call early, call often.
Enjoy your family at home and stay in and enjoy the season. Nothing is more precious than hugs and love from your husband. If you want to go out and to church or synagogue or whatever....go if you want. Invite very close friends over for a SHORT stay....the kind of friends that you can tell to go home if you want. Or, just stay home and enjoy Netflix or movie rentals.

Also, I encourage you to think about counseling to talk with a counselor to help you gain some perspective on all of this.

Imagine that you and I are the two buzzards that will eventually prevail!

You are in my thoughts. Hugs, Susan

PeggyS
12-13-2014, 07:25 PM
Hi Fifa!

You've received a ton of good advice!!
Your plan for Christmas sounds just right - good for you! I decided not to write Christmas cards this year, so I admire you for doing that. I get a little twinge of guilt/ regret every time I open a card, but it goes away quickly!

I got busy & filled out my questionnaires - thanks. My responses for BJH were on the opposite end of the scale compared to my responses for St Louis Rehab!

You mentioned pain in your legs & having to keep moving them. I don't have the pain, but my legs keep twitching while I'm trying to fall asleep. It just started a few nights ago, so I sure hope it's temporary. I brought up heartburn to my family dr & he said it was related to constipation. In fact, he seemed to think everything was b/c of my constipation!

We'll all be keeping you & your dad in our prayers. Please remember not to over-do at the hospital.

hdsluckygirl13
12-26-2014, 07:33 PM
Hi Fifa,
Been thinking of you and your family and hoping that all is well. I hope that your dad's surgery went as planned and that you are both on the way to better days. Hugs,

fifa
01-06-2015, 06:20 AM
Fifa - that sounds like a very peaceful way to celebrate Christmas. And the best way for you and your father to keep the stress levels down and continue with your recoveries. I am so sorry about your brother's passing... it is difficult to lose a loved one at an early age and as you know it helps put life in perspective. Yes, you've been hit by a Mack truck with your surgery and then got a double whammy with your extra difficulties, and then had your concerns about your father. You've been through so much. Right now you need time to have some peace and quiet and build your spirit back up as you recover. You are being very smart about Christmas. (big smiley). Cherish all that you hold dear and let all the hooplah go. Sometimes when we go through life-altering difficulties, it helps us get a different perspective. I was 20 years old and engaged when I was diagnosed with melanoma... a very bad cancer. I have cherished each birthday since (I am 63 now) and the fact that I am happily married (43 years!), was able to have three wonderful daughters and now have three delightful grandchildren -- 2 little boys aged 5 and one granddaughter who is 10 months old. I am about to go with hubby to spend Christmas with them all. Two of the families live 1,000 miles away from me in separate parts of the US, so I am very excited indeed. Life brings its ups and downs, but even through all of those, I have felt truly blessed because at least I have had LIFE. God has blessed me abundantly. You have a Merry Christmas, relaxing and enjoying a relaxing time.

Hi, Susie Bee -

You're just the sweetest and I thank you for your note. Wow - I had no idea you had survived melanoma. That's really quite something.

My dear brother had been complaining to his primary care physician for well over a year about a change in bowel habits and bright red rectal bleeding. His doctor never did a colonoscopy - just diagnosed him with hemorrhoids. Unfortunately, my brother's only insurance was Medicaid because he was disabled, which is to say I think people with insurance get treated better than those with Medicaid in that I don't think enough expensive tests and such (like a colonoscopy or an MRI) get ordered up for the "uninsured" or the "underinsured." Just my personal opinion. He had just turned 50 and was in so much pain on July 16, 2010, that he went to the ER. They did a plain film and then a CAT scan, and told him within hours of him showing up there that he had cancer. They staged him over the next couple of days - he was stage four with heavy metastasis to the liver plus metastasis to the lungs as well. He went through two rounds of chemo. Needless to say, nothing helped. He died December 1st, 2010. So, every time I whine and complain about my stupid back and my petty problems, I think of him (and others I know) who would gladly trade places with me in a minute, and I try to be grateful for what I have. As I'm sure you and others here know quite well, there are just some days that everything is just too much to bear. I've been having a lot of those lately, I think mainly because of drugs (I've never taken much more than a Motrin or used a Lidocaine patch, so all this oxy-crap, valium, and 15 other things I'm taking are really just messing with my mind, I think). I'd like to wean down, and I have eliminated several meds completely (I tapered....I didn't just stop anything), but I'm finding that at eight weeks out today from surgery, after about eight or ten hours without a pain pill, I'm a sobbing immovable mass of emotion. I can't even get out of bed.

One of the worst things is that I'm a huge believer/practicer of yoga, and all the meds have screwed with my brain to the point where I can't even meditate. I've used a LOT of meditation and yoga to push through the pain, but it seems the pain pills won't let me focus in order to push through. That may not make sense. Sorry.

Again, thanks for your nice note. If you have any further advice or words of encouragement, I would be grateful to have them. You truly are blessed and I am happy for you!

Big gentle hugs,
Fifa

fifa
01-06-2015, 06:30 AM
Hi Fifa,
Been thinking of you and your family and hoping that all is well. I hope that your dad's surgery went as planned and that you are both on the way to better days. Hugs,

Hi, there!

Thanks for thinking of me - I do appreciate it! (big smiley) The neurosurgeon tells us all went very well. Since a month had passed between the fall and the surgery, the surgeon said there was part of the spinal cord that was actually "stuck down" (his words) to the vertebra. That took some extra time to free up but he was able to free it. Dad is up and walking with a walker with standby assist of one (meaning one nurse walks beside him - no gait belt needed!). He is having trouble picking up his feet to walk and kind of shuffles, but he's doing it and doing it by himself. PT and OT have really been working hard with him because he's completely motivated and convinced he's going home (even though we're not sure that can happen). The hospital care coordinator is coming out tomorrow to evaluate their apartment to see if he can live there with mom...she'll be his caretaker. If not, then they will both move to a nursing home or some sort of assisted-living place, which will be sad. They just got that apartment in October - turned out to be a lucky move. So, we're all praying tonight that he can go home with "his baby." Neither one of them do very well when they are apart. Thanks for asking about him - that's very sweet.

Hope you and yours are all well and happy and had some great holidays! Thanks again! Write anytime!

Big smileys and hugs,
Fifa

fifa
01-06-2015, 06:58 AM
Hi Fifa...

I'm so sorry this has been so difficult. I think many of us can relate. I certainly can. Hopefully, when you look back on this time, you'll realize it wasn't nearly as significant as it feels right now.

Up until my surgery in 2011, I had only had a tiny bout of depression during a serious illness. The depression in 2011 was pretty deep. I really felt like I didn't want to live. It's ridiculous when I look back on it now. I had zero back pain. I did have hip pain (from trochanteric bursitis) and a lot of numbness and tingling in my legs. I couldn't lie down for more than a few minutes for about a month. I was taking several narcotics, though I look back now and know that they really weren't helping. It all added up, and I was pretty miserable.

You will get past the issues that you have now. Hang in there.

Hugs!
--Linda


Hi, Linda -

Thanks for your nice note. I appreciate the encouragement! I've been having the same thing....the not wanting to live to thing, but I'm not suicidal (don't hotline me - I don't have a plan and I don't want to harm myself or anyone else). LOL Honestly, I'm convinced it's the drugs. I'm not a depressed person by nature. In fact, I'm a big jokester who likes to have fun, and the darker the humor, the better I like it. (smiley) Part of it is that I thought I would be farther along right now than I am. A HUGE part of it is that I've had so much bowel trouble and the pain that goes with that, I've had to take the pain meds, which is what is causing the bowel trouble, and it has just been this endless cycle of stress that's been hard to take. I'm posting my poop thread below, and then I plan to post the details of my last day at Barnes Hospital. I just haven't felt like posting lately. I have to type with one finger on my tablet, and the laptop has been to heavy for my overfull belly. I've been just taking meds and staying in bed - I haven't had the energy to walk like I need to be walking, but I am climbing at least 28 stairs each day, some days more than once, so that's something. That and walking from bed to kitchen and bed to bathroom has been it. If I felt like doing more, I'd be doing it, but right now, even sitting on the toilet for five minutes puts both legs to sleep, and they ache for hours afterward (no idea what that's about). It's like when your foot goes to sleep, and it starts tingling when it wake up, and then comes the ache....I don't get the tingling, but I get the ache, and it lasts for hours.

I totally relate to what you said about that it seems significant now but won't later, and I agree. Hubby and I have both had some awful stuff happen to us (or so we thought at the time), and you wouldn't believe how many of those "terrible" things turned out to be a blessing in the end. Like I said, I normally am a super-positive person and constantly look for something positive in the most negative of situations. Truly, I believe the oxy-craptin has taken my ability to do this away. I sit here and sob some days over nothing. Nothing has happened and I'm not in pain at the time, but I'll sit here and cry for an hour for no reason. It's maddening.

My pain is improving and I'm weaning down from the meds even though it has only been eight weeks. It's just getting harder to deal with the "crazy" that seems to be my reaction to (I believe) oxycontin. It's that or Valium, or one of the other anti-spasm who knows what the hell I'm taking. What I know for sure is that someone who had such a minor surgery compared to most of you, and someone who is taking as many different drugs as I am taking, I feel pretty positive in saying I should be feeling much better than this. I may not understand the nature of this pain, but it seem to be breaking through about eight different scripts right now. Hubby is keeping the log and I'm getting everything I'm supposed to be getting right on schedule, but I can't seem to shake the pain. In trying to be positive, I guess this is just going to take longer than I thought. I truly thought I'd be back at my desk this morning. That, the pain, and my dad's health has just truly been too much to bear. I know I'll get through it, but right now it just sucks. (smiley)

Thanks again for your reply - you always have the best advice and I appreciate it.

Hugs!
Fifa

fifa
01-06-2015, 07:12 AM
Hi Fifa!
How is your lower body today? I think our nerves & muscles respond in a variety of ways as they're learning to adjust to our new spines.

I'm on a small dose (10mg 1x a day) of gabapentin for nerve pain. It was prescribed in rehab to supplement my pain med, hydrocodone. I get that sudden urge to move my legs and hands while I'm sleeping or resting. It's annoying, not really painfully. I can increase the gabapentin, but I'd rather not - I've heard it's hard to quit.?

Hope you have a good day!

Hi, Peggy -

Does the gabapentin/Neurontin seem to be helping your nerve pain? My physician has suggested this to be and wrote the script, but I didn't fill it. I didn't fill it because every time I talk to my primary care physician or the folks at Barnes, they just send another script for something different. I already had two scripts i was taking for nerve pain before they sent the Neurontin, so what's a girl to do? LOL

If the gabapentin helped you, I'm happy to try it. This achey stuff is crazy - won't let me sleep. I can't sit on the toilet long enough to urinate without both legs going to sleep, and then the ache afterward lasts for hours.

Honestly, I'm beginning to think I've got a screw up against a nerve root or something. I can't make any sense of it, and I don't see Dr. B until April.

What have you found to be helping you the most? You had twice the surgery I did, but I had a lot more BMP than you did. I think your rehab really helped you. I wish they would have sent me (and gotten rid of the ileus before discharge, but that beaten horse is pretty much dead at this point). LOL

Take care.
Fifa

fifa
01-06-2015, 07:44 AM
FIFA, I had the same emotional reaction after surgery that you describe! My very kind husband had no idea what to do with me. I cried over very small events....like the tears were there just waiting for my emotions to be triggered. Gayle has great suggestions. I'd like to add a few:
- Tell the people that care for you that people on the forum say that it is normal, due to a combination of the enormity of the surgery, the non-supportive time after surgery and your frustration with how you were treated, the drugs you take, pain, sleep deprivation or no period of sleep of 6 hours continuously....and that the crying really isn't about the situation and IT IS NOT ABOUT THEM. Tell them the reaction to your crying that works best for you: like just a quick hug and don't ask why you are crying or whatever works for you. Also, recovery is a good year.....some family/friends think that you should be "normal" after 6 weeks. It gradually gets better over the first 6 weeks, then 3 months, then 6 months, 9 months, one year. Also, sometimes it gets better and then you feel worse...emotions do not just get better every time, so don't get disappointed when you have a setback.
- Do you have someone to talk to that really listens and supports you?
- Don't over think the crying. It just happens and will decrease with time as your pain.
- Reach out to good girlfriends and invite them over to your home....and tell them not to stay too long.
- Get out of the house for even a short while....lunch is great, whatever works for you. Fresh air. Remember a pillow to cushion your back in the car. Of course, you are the passenger.....no driving yet!
- Walk as tolerated every day
- surround yourself with non-toxic people
- is your bed comfy? Favorite chair comfy? If not, change with a topper or more pillows. New sheets. Soft flannel sheets from LL Bean (supima sheets)...think that they have a discount now and always take back returns.
- is your pain being addressed?
- constipated?
- look at self-care options: hair cut, pedicure, manicure, foot and lower leg massage. Do not do a body massage.
- are you taking a nap every day?
- are you eating well? Fresh fruit, veggies, lean proteins
- are you drinking enough water?
- if you have a dog, hug her more!

I promise, promise, promise that life will get better. Give it time. Have patience. Be kind to yourself. Be very kind to yourself.

Gentle caring hugs,
Susan....been there done that, just did that again.....

Hi, Susan -

I think this is one of the posts I responded to one evening that just disappeared. So frustrating.

You are so incredibly kind, honest, and thoughtful, and I appreciate your posts so much, especially with all you are going through. I agree with you - I think this in the end will end up being a setback, but right now, it feels like it is always going to be this way. Yes, thanks for asking, I have a great support system and have explain to all of them I have only two moods these days....I'm either a total "witch with a b" or I'm a sobbing mess, and none of it has to do with anyone, and they just have to let me work it out. Other than handing me a tissue while I'm sobbing, there's really nothing anyone can do.

I'm napping and probably napping more than I should. I'm walking, but not as much as I should be. I'm going up and down the stairs here because it is too cold to be outside plus the stairs have handrails that I can use. I've found the walker to be a bit of a joke in our 1970s house - it doesn't fit through a lot of the doorways, and I can't pick it up and jerk it around to try to get it through sideways...not worth it. I'm not supposed to be lifting or twisting anyway. I'm better off without it and just doing my "hobo stairmaster" as much as possible. Part of going downstairs is to let the dog out, so I'm getting some fresh air and spending time with my best pal, so that's good.

The "no" answers to your questions above is no, I don't feel like my pain is being addressed adequately at all. The drugs I'm taking just simply change my mental status. Frankly, I'd give anything to just be taking Motrin and leaving all of this crap in a dumpster somewhere. The pain medicine makes me sleep, approximately two hours at a time, and then the insomnia kicks in and I do my stairs with the puppy or just lay my fat behind in the bed. My bed is comfortable for the most part - I'm just too uncoordinated to log roll around on it. It's a tempurpedic and not very firm at all, so it's hard to roll over when the mattress gives when weight is put on it.

No, I'm not eating well at all. My pain medicine was changed over from oxycraptin to Percocet, which has Tylenol in it, which I can't take. Since the script was already filled by the time my hubby brought me a pill and I realized what it was (and that I couldn't take it), we were stuck with it. So, the ortho group wrote me a script for either Reglan or Zofran (an anti-emetic and I cant remember which one it is) to cover the nausea that Tylenol creates. I'm finally drinking enough fluid now that I'm measuring it, and i hug my puppo as much as he'll let me. He hasn't left my side since I've been home. It's killing me that I can't pick him and hold him as was our habit before this stupid surgery. He sits at my feet and stares at me (his signal that he wants to be loved on) and I can't do it. Hubby will pick him up and put him in my lap, so at least that's something.

Things are getting better but too slowly for my taste. I'm impatient. I just didn't think for a minute it would be like this. When you read the poop thread once I get it posted, maybe things will make more sense. I wish I had been better prepared for constipation before I got home. The bowel obstruction/fecal impaction is by far the worst thing I've ever experienced, and that includes this surgery and the pain involved with this surgery.

Hope you are doing well. Thanks for asking such great questions and giving such good advice. I appreciate your input so much!

Gentle hugs,
Fifa

By the way, I laughed at your "been there, done that, just did it again" line. Please, DON'T do it anymore, okay? (smiley)

fifa
01-06-2015, 07:56 AM
Hi Fifa!

You've received a ton of good advice!!
Your plan for Christmas sounds just right - good for you! I decided not to write Christmas cards this year, so I admire you for doing that. I get a little twinge of guilt/ regret every time I open a card, but it goes away quickly!

I got busy & filled out my questionnaires - thanks. My responses for BJH were on the opposite end of the scale compared to my responses for St Louis Rehab!

You mentioned pain in your legs & having to keep moving them. I don't have the pain, but my legs keep twitching while I'm trying to fall asleep. It just started a few nights ago, so I sure hope it's temporary. I brought up heartburn to my family dr & he said it was related to constipation. In fact, he seemed to think everything was b/c of my constipation!

We'll all be keeping you & your dad in our prayers. Please remember not to over-do at the hospital.
Hi again, Peggy -

I'm trying to respond to everything everyone has said, and I think I've missed a few (including this one).

I've not received my questionnaire yet from Barnes. They owe me two - one for the preop visit with the myelogram and all of that, and a second one for the hospitalization. I've received a bill, though. Nothing for the BMP on it, so I don't know if that will just come later or what. Boone has already billed me for the second hospitalization for the ileus. It's a $300 copay that I owe them and I'm going to go up in person with my "evidence" and they're going to eat that $300. If they want it, they can get it from Barnes, since Barnes should never have discharged me in the first place and I have the discharge xrays to prove it. It's not like $300 is going to break the bank here, but they need to be more careful and step up their game. Those kinds of mistakes kill people. When the colon perforates and all that waste enters the abdominal cavity, it is nearly impossible to get rid of. At the very least, Barnes needs to assign someone from medicine to handle the things that the ortho group can't/won't handle. The ileus was stupid and completely unnecessary, and I'm still ticked about it (mostly the five days of pain I had to live through before Boone fixed it). I'm about done complaining about it - I just can't believe, after all the wonderful things I've heard about Barnes on this forum and elsewhere, that that happened.

Take care - talk to you soon!

Hugs,
Fifa

fifa
01-06-2015, 09:36 AM
Hi,

You should know that in the eight weeks (today) since I've had surgery, I had one ileus which required a three-day hospitalization to fix, plus since then, have had four separate fecal impactions (also called bowel obstructions). Wikipedia has a pretty good, not so gross description, so I would suggest going there if you would like to know more. What follows is my story, which is obviously biased and may be too much information and/or too gross for some.

An ileus is basically when your little segments of bowel stop moving. Your bowel is kind of like an earthworm - it moves in segments and your waste moves from segment to segment until it reaches your anus. When you get an ileus, it is usually due to anesthesia....your little segments don't wake up very quickly after being asleep during surgery. That's why you can't have any food or anything until you start passing gas and your segments began to wake up and start moving your waste toward your anus.

A bowel obstruction or fecal impaction is a completely different thing. With this problem, your little segments of bowel keep everything moving toward the rectum. The problem is typically there is not enough (usually) water in your bowel to keep everything slicked up and movin on out. So, everything starts compacting together typically in your rectum and up to your colon, and it keeps packing and keeps packing and doesn't really stop, even if you aren't eating anything. This waste that is accumulating I have nearly no description for - it it like Quickrete (concrete mix) that someone has put not quite enough water in, but it has started to set up and take the shape of whatever container it is in. Sandstone may be a good descriptor - I'll have to think about that one. LOL It is hard, gritty, sticky, dry, and nearly impossible to break apart once it is packed down. It packs down so hard that the colon just keeps expanding to accommodate the ever-increasing volume of waste. The volume of waste contained there cannot possibly pass through the anus until it is broken up. Should this happen to you, you should go to an ER and tell them you have a fecal impaction. Trust me, they are used to it and will be so nice to you - they know how embarrassing and uncomfortable it is.

This happens a lot to people on narcotics, the elderly, and people who don't eat enough fiber, don't get enough exercise, and/or stay adequately hydrated. Most people end up in the hospital where they are "manually disimpacted," unless the situation has grown so large that surgery is needed. There is no way for this giant mass of feces to pass other than to break it apart while it is still inside the rectum and remove it piece by piece. One of the big problems is that your body still tries to expel it, so there is a lot of pain, cramping, and bloating, and frankly, the compacted mass of stool is just too large to pass through the anus, so it just sits in the rectum and grows larger and harder and more painful. You have an incredible urge to defecate and cannot. This is by far the most painful thing I have ever experienced, especially with an extremely fresh lumbar surgery and back wound.

We tried enemas, suppositories, laxatives, and everything to get this to pass, but it quickly became obvious to me this was too large to pass.

One of the reasons I haven't posted much here and have been feeling so awful is that I've manually disimpacted myself four times now. Had I known the extent of the obstructions, I would have never attempted this myself. I just kept thinking "how much more can there be????" I knew something was wrong with the first episode. I felt bloated and sick, and felt like I had to "go," but couldn't go. Then, the cramping started and nothing was happening. Due to being fused to the sacrum plus pelvic fixation, I couldn't really figure out what was going on down there cause I can't really reach my "rear bits." Let's leave it at that. I weighed myself before the first episode. It took 5.5 hours to get everything that was in me out of me. After resting a bit when it was all over, I weighed again. I weighed 7.5 pounds less than what I did when the episode started. No joke - got the pictures of the scale to prove it. Two of the other episodes came on so hard and fast that I didn't weigh myself before. The last episode, I weighed about 4.25 pounds less after the disimpaction.

I think I'm not doing so well at present, eight weeks out, is that I had to bend and twist a little too much to try to pry everything out of me. This wasn't easy and was painful not only because of the impaction but because I had to contort myself in ways one shouldn't do after a lumbar fusion. Your bowels are so close to your spine, when they fill up with waste, the pain from both your fusion and your over-full bowels is just excruciating. Oh, and by the way, I was on a prescription stool softener twice a day since November plus was using Ex-Lax every other day or two to try to make something happen. The whole time, it felt like something needed to happen, but nothing every did. We had Dulcolax suppositories on hand, which saved my life, plus Fleet enemas. I keep Preparation H on hand because I have an external hemorrhoid that flares up every once in awhile. I had stimulant laxatives on hand as well as stool softeners, plus the prescription stuff I was sent home with from Barnes. The enemas and suppositories softened things up to where pieces could be removed with my lubed gloved finger and a box of Q-tips, but the stimulant laxatives kept everything going toward the rectum, which may have been a mistake. I would have liked to have had a break during that first five and a half hour episode. Anyway, it finally cleared. It was about three days before I did anything other than take meds and stay in bed. I was in severe pain and exhausted.

The best way (and I'm sorry to be graphic) to explain this is to tell you it was like passing a ten-pound sack of baking potatoes one at a time, with all the cramping, straining, and yelling like someone in labor. This is about the size of the feces I was trying to pass. I highly do not recommend this. I probably should have gone to a hospital to have this done, but I've seen it done, and I thought surely I could do it myself...that it wouldn't be that bad. Had I known it would be 5.5 hours of labor pain, I would have gone. The other three episodes were not as bad as the first, but the next one was a four-hour episode and the last one was about two and a half hours. I just kept thinking "How much longer can this go on?" I mean seriously, I've been eating next to nothing. I've lost 40 pounds. I couldn't believe there could be that much stuff in there - all I'd been eating was fruit packed in natural juices - no sugar or anything bad. Not a Christmas cookie, a Thanksgiving turkey dinner.....I mean nothing. It was Dole fruit packs and chocolate soy milk and iced (and hot) tea.

WARNING - don't ever try to do this yourself. Just go to a hospital. It happens all the time. Ladies, you stand a really good chance of creating a hole (fistula) between your rectum and vagina, plus you run the same risk as a man in that you also risk tearing your colon or rectum, and again, you don't want any of that waste going into your abdomen. That's called peritonitis, and you don't want it. It is often not survivable.

So, that's what I've been up to and why I think I'm exhausted and feel lousy. I called the ortho folks and they recommended laxatives. It was a holiday week, so I couldn't get my primary care physician.

My advice to all of you is the same stuff being said over and over in this forum. Eat right. Get plenty of fiber. Rest. Drink plenty of fluid (measure it to make sure). In fact, have someone keep records of everything if you are too drugged to do it yourself. You need to know how many days it has been since your bowels have moved, and frankly, I wouldn't let more than a couple go by before intervening with something. Have a house full of laxatives, and I mean different kinds of laxatives....I like Peri-Colace 'cause it combines stool softening with stimulant. The Dulcolax suppositories are great. Fleet enemas can't be beat. Keep a couple of bottles of mag citrate on hand...they work SO fast. And, you'll be pretty sore after trying to pass literal fecal footballs, so I highly recommend Prep H for the swelling and pain. If you didn't have a hemorrhoid before, you will most likely have one after all the straining, and it will be ANGRY. We also have a warm water bidet, the Japanese kind with unlimited hot water, and this went a long way into helping me break this stuff up and ease the pain. We've used Charmin wipes for years, and those are always great to keep on hand.

If this post offends anyone, I apologize. I just keep seeing these questions about "what do I need to stock up on before surgery," and lots of different types of laxatives would be my best answer, plus nitrile gloves and lubricant.

Lastly, I've ditched the prescription stool softener that Barnes gave me. I'm taking two tablespoons of Milk of Magnesia every day, and am no longer having any problems. In fact, I may cut that dose in half because I'm going a little too often now.

Happy pooping! May you never get an ileus or impaction - that is my prayer for you all.

Fifa

springchicken
01-06-2015, 10:02 AM
Hi Fifa,
I'm so sorry you're having such a terrible time. I can definitely relate to the bowel troubles. I noticed on another thread that you were on anti- nausea drugs at one point? Not sure if you still are but they are incredibly constipating. Muscle relaxers can be too. I know its so awful having to choose between pain or all the side effects from the meds. But I found as I tapered off even just a little it helped so much. Mirolax was my godsend. Took it twice a day. It's gentle but really works.

Anyways I'm actually typing this as I head to my one year follow up with my surgeon. Wish I could say all is well but Im still dealing with significant pain. I'm on gabapentin which has also been so helpful.

Good luck! Hang in there. You will not be this way forever.

green m&m
01-06-2015, 11:25 AM
OH yes I agree with springchicken.

Zofran for me works but with bad side effect -- gave me the worst constipations ever. This was in pill form... I can't even imagine how bad it'd be if I was given through IV.

I had my nurses informed well on which anti-nausea to give me, except the lazy one who ended up wasting a syringe full of zofran because she just didn't listen (or would leave before i had a chance to tell her which would only take extra few seconds)

I think I got reglan in my IV I don't think it caused constipation -- it comes in both IV and pill form.

ksmom0611
01-06-2015, 11:43 AM
That was the best message I have ever seen about poop! You should be a writer, because your descriptions were brilliant!

I am SO sorry you have had to go through all of this. Of course you feel down, you have been dealing with 2 major medical issues at the same time. Have you thought of contacting a GI doctor or pain management doctor? I know you are getting off the pain meds, but seems to me you still have a lot of pain. There are many options out there for pain and you should not have to suffer or choose between your back or your bowels. No pun intended (initially), but you have to make a big stink with the doctors about this!

As someone who's surgery is coming up, I really appreciate your honesty and advice. Unfortunately you have had to go through this horrible thing, but hopefully your sharing it will prevent others from experiencing it.

Big gentle hug!

fifa
01-07-2015, 04:06 AM
Hi, there! (for spring chicken and green M&M)

I think the bowel troubles are so common with all of us, truly. I just wasn't at all prepared for that. My lord, the pain/cramping I had when it started...it was like my body said - "okay, this is coming out out NOW," but it was too big to pass. I think half the neighborhood heard me screaming, plus then the bending and just a tiny bit of twisting to try to remove it - my back was just killing me. I'm glad it is over - at least, I pray it is over.

This whole time, eight weeks, I've been having medication trouble. I was originally sent home with oxycodone 5 mg take one or two every four to six hours (if I remember right). I was doing fine with it, sleeping a lot, doing some crying, but doing okay. I keep saying oxycontin, but it was oxycodone. We had a script that was to last a month, so we called ahead and had the next script mailed to us. When it came, it was for Percocet, which is actually the same 5 mg of oxycodone plus 325 (if I remember right) of Tylenol.

Maybe a month before surgery, the ortho folks told me to stop taking Motrin because it would inhibit the fusion. I started taking Motrin over 20 years ago because that is what the ortho group here always prescribed for back pain. It helped my pain SO much better than Tylenol, so that is basically the only pain med I've ever taken on a regular basis. There have been several times over the years that I've taken Tylenol or another product with Tylenol in it, and came to find out that Tylenol really upsets my stomach.

So, when we received the script for Percocet and filled it without knowing it had Tylenol, it wasn't long before the nausea set in. I couldn't figure it out. I had already been having bowel trouble and truly wasn't eating much at all. I had my typical acid reflux, which I get a lot when my stomach is empty, but this was full-on "sleep with the trash can next to the bed" nausea. When we figured out it had to be the Tylenol in the Percocet, we called the ortho folks and they called in a prescription for odansetron (Zofran). I've been taking it twice a day ever since because it really does help with the nausea I've had from the Percocet.

Yes, I've truly had more trouble with stomach/bowel issues than pain, which is not to say I haven't had significant pain issues. I guess the stomach stuff was unexpected, so somehow in my mind, it was worse and I just wasn't prepared. Plus, it is completely embarrassing for me to have to ask my husband to insert a suppository or give me an enema.

I would very much like to ask you a question, please. I literally have about 15 scripts on the kitchen counter...three pain pills (I'm only using the oxycodone), two muscle relaxants (Valium and Tizanidine), a script for Nucynta (a newish pain med that I'm afraid to take due to contraindications - it says not to take it if you have an ileus, so after having an ileus plus four impactions, I don't want to even try it), and a script for baclofen which I'm not taking and a whole bunch of gabapentin (Neurontin) which I'm not taking. It just all seems like too much for me...for someone who hasn't had anything but Motrin for 20 years, having 15 prescription bottles on the kitchen counter is a little daunting, and as crappy as I've been, I've been trying to do research and try different combinations of things. For instance, the Tizanidine (Zanaflex) which is for muscle spasms...in the side effects for this med, it says, "may cause back pain and increased muscle spasms" (constipation and stomach trouble, too.) What the ever-lovin F? Valium, also for muscle spasms, may cause muscle spasms (under side effects) and may cause trouble urinating (there's my decreased urinary stream, by the way, plus probably the horrible bed spins I had more than a month ago (basically when I started taking it. Also, Valium causes depression, and it seems like a side effect for absolutely everything I'e been prescribed causes constipation. I have baclofen, another muscle relaxant, which says it probably shouldn't be taken with other muscle relaxants. Then, I have the Neurontin (gabapentin) - which may have interactions with antacids (aluminum and magnesium), and with hydrocodone.

Serious question, everyone - what do you all take and how do you manage the side effects?
And, to Spring Chicken in particular (and anyone else who has tried the gabapentin) - did it work for you?

I'm finding that the opioids just screw with the part of my brain that cares that I'm having pain. Nothing I'm taking is reducing the muscle spasms. My back pain is seriously manageable (I'm at about the same pain level as I was preop except there are a whole lot of things that hurt when I do them now (so I'm not doing them) and there are several things that used to kill me that aren't bothering me at all. It's a fair trade so far. I think I could manage the back pain if I could just get rid of the "spasm" part.

Do you all have any suggestions of any combinations of meds that worked for you? I'd like to find something that lets me have a little bit of a clear brain so I can work, something that doesn't make me immediately want to fall asleep, something that doesn't make me sob, confused, or wake up not knowing where I am). I would just like to know what worked for some of you.

I really can't take Tylenol, but believe if I continue the Zofran twice a day like was prescribed, I could probably tolerate it.

Thanks, everyone, for bearing with me. I hate drugs and really don't want to take anything, but obviously have to take something for the pain/spasm.

Big hugs,
Fifa

fifa
01-07-2015, 04:10 AM
Hi Fifa,
I'm so sorry you're having such a terrible time. I can definitely relate to the bowel troubles. I noticed on another thread that you were on anti- nausea drugs at one point? Not sure if you still are but they are incredibly constipating. Muscle relaxers can be too. I know its so awful having to choose between pain or all the side effects from the meds. But I found as I tapered off even just a little it helped so much. Mirolax was my godsend. Took it twice a day. It's gentle but really works.

Anyways I'm actually typing this as I head to my one year follow up with my surgeon. Wish I could say all is well but Im still dealing with significant pain. I'm on gabapentin which has also been so helpful.

Good luck! Hang in there. You will not be this way forever.

Sorry - before I hit submit on that last post, I meant to wish you good luck with your one-year follow up. Hooray for you!!! Hope all is well - will be praying for you!

Hugs and big smileys,
Fifa

fifa
01-07-2015, 04:31 AM
OH yes I agree with springchicken.

Zofran for me works but with bad side effect -- gave me the worst constipations ever. This was in pill form... I can't even imagine how bad it'd be if I was given through IV.

I had my nurses informed well on which anti-nausea to give me, except the lazy one who ended up wasting a syringe full of zofran because she just didn't listen (or would leave before i had a chance to tell her which would only take extra few seconds)

I think I got reglan in my IV I don't think it caused constipation -- it comes in both IV and pill form.

Thanks for this, M&M. I honestly had no idea about the Zofran causing constipation. Yes, I'm still on it because I'm alternating the Percoset right now with the oxycodone, sort of trying to figure out not only which one works better but which one makes me less crazy. I took my first oxycodone tonight after having been on Percocet for a week (we ran out of oxycodone over the holidays and had to have my local primarily care physician graciously write us a small script for Percocet to get us through until the script for oxycodone arrived in the mail). I just can't take the Percocet without taking something for my stomach. Anyway, less than an hour after taking my first 5 mg oxycodone in a week, I was confused, wobbly, wandering around, and sobbing. I had quite a bit of pain (hubby woke me up in order to give me the oxy as we are following a very tight around-the-clock schedule so I don't get behind on any of my meds. You all know what happens when the pain gets ahead of you).

I'm measuring my intake and have been since the second or third bout of fecal impaction. I have a giant University Hospital cup and straw combination that holds 32 ounces. I'm drinking about six of these a day now. It seems like we're making iced tea just about hourly. I'm still not eating much, but I'm drinking everything I can find. I especially am fond of chocolate soy milk, and usually have at least one glass of that in a day (it is packed full of protein and I just love it). I've stopped drinking coffee for the most part just because my stomach has been a mess since I left Barnes, so I typically am now starting my morning with a cup of hot tea with plain soy milk and just a touch of sugar.

Something happened while I was in Barnes and had the ileus. I can't tolerate sugar really much anymore, or at least not in great amounts. I tried a piece of fudge over Christmas and had to take Zofran shortly after. One Christmas cookie caused the same problem. If any of you are familiar with the Missouri Baking Company in St. Louis on "the hill," we go every year to buy cookies for Christmas gifts for family and friends (and ourselves, of course). They are tiny shortbread cookies of every flavor, biscotti, etc. They are tiny and packed full of butter and sugar, and are the best things ever. One cookie made me sick enough to take a Zofran. Lastly, I've mentioned this before, I can't drink anything carbonated since I left Barnes.

I'm blaming all the meds for all of my troubles at this point, and just want to get off everything and see what the new normal is. There doesn't seem to be much point in seeing a whole bunch of specialists now while I'm taking all of this.

I'm only taking the Zofran as needed, which is twice daily while I'm on the Percocet. So, I'm happy to know it causes constipation and I will be careful using it. Thank you so much for this important information - I had no idea. I haven't been well enough until lately to use the laptop and look up all of this for myself.

Hope you and yours are well - thanks again!

Big hugs,
Fifa

fifa
01-07-2015, 04:50 AM
Hi, everyone -

For all of you who were praying for us, I just thought I would let you all know that my dad called me from his brand new recliner in their brand new apartment today. He was discharged this afternoon!! The discharge planner/care coordinator took my folks over to their apartment just to make sure that everything was accessible to my father so he could safely be discharged home rather than having to go to a nursing home or assisted living situation. But for a couple of throw rugs (bath mats - one in front of each shower), the apartment passed muster and dad is free to return home, of course with all kinds of restrictions. He'll never walk again without the walker, but that sure beats a lot of the alternatives. Since it was so cold here today, snowy/rainy, etc., the care coordinator told him to stay in his recliner...she would go back to the hospital and fill out all the necessary paperwork, and they would pack up his belongings and let mom come over later to sign him out and pick up his things.

I couldn't stop crying when he called, but you all know I cry quite a bit anyway these days (LOL). Anyway, I thought you all might want to know that at least one problem is solved for now.

Thank you all who kept us in your thoughts and prayers. I have no doubt he got to go back home because of all the prayers and good wishes being sent his way. Thank you.

The big dummy had a five-level cervical fusion (with rods and screws) and is taking one Percocet at bedtime to help him sleep. No pain whatsoever. I told him how very jealous I was. (smiley)

Anyway, thank you all for your concern. Hopefully, my own mood will improve now and I can worry a little less. It is nice to finally have some good news.

Hugs and love to all of you,
Fifa

fifa
01-07-2015, 05:07 AM
That was the best message I have ever seen about poop! You should be a writer, because your descriptions were brilliant!

I am SO sorry you have had to go through all of this. Of course you feel down, you have been dealing with 2 major medical issues at the same time. Have you thought of contacting a GI doctor or pain management doctor? I know you are getting off the pain meds, but seems to me you still have a lot of pain. There are many options out there for pain and you should not have to suffer or choose between your back or your bowels. No pun intended (initially), but you have to make a big stink with the doctors about this!

As someone who's surgery is coming up, I really appreciate your honesty and advice. Unfortunately you have had to go through this horrible thing, but hopefully your sharing it will prevent others from experiencing it.

Big gentle hug!

Hi, there -

Yes, my next stop is with the pain management doctor here in town, who is supposed to be wonderful. I just had colonoscopy/upper endoscopy in April. I have them every two years because I have a four-generation colon cancer history on my mom's side of the family. I'm confident the GI will tell me it's all the meds I'm taking, and I think the person to straighten out the meds would be the pain management doc.

I know it has only been eight weeks, but I just want to start weaning down off some of this stuff and trying to get a life back. I don't feel like doing the walking I'm supposed to be doing. I'm dizzy and confused quite a bit. My stomach will only tolerate a few things, so I've lost 40 pounds and have zero energy. So, I think the pain doc is the way to go. I'd like to get straightened out before I see the ortho surgeon in April or May. For no reason other than just not feeling/doing as well as I thought i would be at this point, I'm afraid to see the ortho surgeon for anything right now because I'm afraid he's going to tell me something is screwed up. My legs go numb after sitting just a few minutes. I have a pain in my left thigh in exactly the same place every time that doesn't happen very often, but feels like someone is poking an ice pick into my thigh. I have some occasional non-painful "crunchy" going on in the tailbone and hear an occasional tiny pop in the spine - I have no idea if this is normal or not but I'm too scared to call and ask.

So yes, pain doctor is the next stop as soon as hubby can drive me down there. I can't drive yet while still on all this medicine.

Thanks for your nice reply. I laughed out loud at you "big stink" comment. (big smiley) At one point in my long poop post, I wanted to say that I was in so much pain with that that I didn't really give a crap or a sh** if I messed up the fusion....that's how much pain I was in. However, I already couldn't give a crap, but I thought that was too easy of a joke. LOL Yours is much better.

Thanks again - take care of yourself and stock up on every kind of laxative preop. No one wants to go to Walmart for mag citrate at 3:00 a.m. It's not like it will hit you during normal business hours..... LOL

Big hugs,
Fifa

springchicken
01-07-2015, 07:22 AM
Hi Fifa!

Unfortunately you are probably in some terrible feedback loops. Like, the Zofran causes terrible constipation, constipation causes nausea, and then going on new narcotics for the first time also causes nausea, which makes you need more Zofran. ANd straining to go the bathroom flares up the back pain, etc.

So I can just speak anecdotally, but I'll tell you what I experienced.

At the start, I was on Oxycotin (this is the extended release) twice a day 20 mg each time. And I was on Dilaudid 4 mg every 4 hours for the break out pain and Flexeril (a muscle relaxer). I was spaced out beyond belief! I looked at my pain journal and at 8 weeks I was still on Dilaudid and Oxy, but off the Flexeril. And I was weaning off of everything, but very slowly. I spaced the Flexerils out so that instead of every 4 hours, it went to every 6 hours, etc. I starting cutting down the Oxy from 20mg, to 10 (can't cut these extended release in half though). And so on. It went this way for me for a while. I went off the Oxy first. And then I was still on Dilaudid for months, but at tiny doses. I had replaced most meds with Tylenol.

So Tylenol causes you nausea? I've never heard of Tylenol by itself (without codeine or in Percocet) causing upset stomachs... I know it affects the liver. Is it possible you are allergic? Might be worth exploring. Maybe someone else could weigh in on this. I just wouldn't want you to go on it if you were having some strange reaction. Percocet makes me very nauseous, however. All the narcotics did when I first went on them. And after months of being off them, I took Oxy and Dilaudid (separately) for bad pain days and both made me nauseous.

Ok, sorry to babble. I just empathize with the nausea because I have a very sensitive stomach. I will say that once I was on the narcotics for a while, my stomach problems went away, but they would flare up every time I had to cut the dose. It sucks, but tapering up and down helps. This was only temporary, too, however.


I had persistent pain after the surgery for months. I still do. I have trouble sitting. It's some sort of nerve problem. So that's why I went on the gabapentin. I would say first find the pain killers (narcotics) that work for you, becuase you still have surgical pain. And if you need to supplement the narcotics, try to decide if your pain is muscle related or nerve related. If its spasms, the muscle relaxers would help more. If it's numbness, tingling, sharp pains, burning, then maybe gabapentin is worth a try. If you do go on gaba, start low, and build up a tolerance. It can cause slight stomach problems and dizziness, but it you increase slowly you will be ok. And the side effects go away with time. It is much easier tolerated then narcotics.

I hope that helps. Please feel free to throw any more questions my way. I'm sure everyone finds unique combos for them.

Oh, and thanks for the good wishes! My xrays look great, mri looks fine. It's one of those catch-22's. I'm happy not to have obvious problems showing up, but frustrated that my pain source is indeterminable at the moment! I think the problem is my SI Joint, and I'm getting an injection there soon.

_springchicken

jackieg412
01-07-2015, 07:37 AM
Hi Fifa, I hope each day brings improvement. Pain management is great. It seems that these doctors understand medications and the side effects so well. They also can offer other suggestions for pain. I found increased walking was part of the key to getting some of this under control. It increases good feelings and helps to relax the muscles. I too lost a lot of weight and only part of the weight came back through time. I mean years. Also even forcing yourself to get out each day, helps with mood and that helps everything else.
I am glad your father is doing well, but cervical fusion is easier than these long fusions of the spine. The cervical spine only holds up the head as compared to holding up the whole body. In the cervical they put these little plates and screws. The incision is smaller also. I had my cervical done after the spine . 6 weeks ago , I had the cervical increased one level. So I am still adding on to the fusion basically it is c3 to pelvis. I hope everything continues to improve for both of you.

jackieg412
01-07-2015, 07:45 AM
Sorry i forgot to add this. I found out not to force food. Basically not to eat unless I was hungry. It avoids nausea . I use to just throw up the food that would just sit in the stomach. Then eat when I was hungry and I would be alright. Also, I just read on my paperwork, that fentanyl can cause urination problems. Maybe other pain meds can too.

green m&m
01-07-2015, 12:32 PM
Fifa,

Gabapentin on top of helping with nerve pain is also helpful for mood. Only problem with it -- I tried it briefly for nerve pain unrelated to the scoli is that it made me feel very sleepy. Not everyone experiences this though.

Maybe try it at night? I don't think there's extended release gabapentin, so you could try at half dose initially and see how that works. It might help keeping the ups and down of emotional wave you are experiencing a bit smoother.

In terms of zofran, it's works so well for nausea and when I was taking it regularly I had to -- because of a chemo drug making me nauseous quite frequently. The chemo drug dehydrated me and zofran gave me constipation on top of that. I'll avoid zofran now if there are other choices. I figured at the hospital I wasn't going to risk it since I was already experiencing sluggish bowels and haven't had a bowel movement when the nausea hit.

fifa
01-08-2015, 12:09 AM
Hi Fifa!

Unfortunately you are probably in some terrible feedback loops. Like, the Zofran causes terrible constipation, constipation causes nausea, and then going on new narcotics for the first time also causes nausea, which makes you need more Zofran. ANd straining to go the bathroom flares up the back pain, etc.

So I can just speak anecdotally, but I'll tell you what I experienced.

At the start, I was on Oxycotin (this is the extended release) twice a day 20 mg each time. And I was on Dilaudid 4 mg every 4 hours for the break out pain and Flexeril (a muscle relaxer). I was spaced out beyond belief! I looked at my pain journal and at 8 weeks I was still on Dilaudid and Oxy, but off the Flexeril. And I was weaning off of everything, but very slowly. I spaced the Flexerils out so that instead of every 4 hours, it went to every 6 hours, etc. I starting cutting down the Oxy from 20mg, to 10 (can't cut these extended release in half though). And so on. It went this way for me for a while. I went off the Oxy first. And then I was still on Dilaudid for months, but at tiny doses. I had replaced most meds with Tylenol.

So Tylenol causes you nausea? I've never heard of Tylenol by itself (without codeine or in Percocet) causing upset stomachs... I know it affects the liver. Is it possible you are allergic? Might be worth exploring. Maybe someone else could weigh in on this. I just wouldn't want you to go on it if you were having some strange reaction. Percocet makes me very nauseous, however. All the narcotics did when I first went on them. And after months of being off them, I took Oxy and Dilaudid (separately) for bad pain days and both made me nauseous.

Ok, sorry to babble. I just empathize with the nausea because I have a very sensitive stomach. I will say that once I was on the narcotics for a while, my stomach problems went away, but they would flare up every time I had to cut the dose. It sucks, but tapering up and down helps. This was only temporary, too, however.


I had persistent pain after the surgery for months. I still do. I have trouble sitting. It's some sort of nerve problem. So that's why I went on the gabapentin. I would say first find the pain killers (narcotics) that work for you, becuase you still have surgical pain. And if you need to supplement the narcotics, try to decide if your pain is muscle related or nerve related. If its spasms, the muscle relaxers would help more. If it's numbness, tingling, sharp pains, burning, then maybe gabapentin is worth a try. If you do go on gaba, start low, and build up a tolerance. It can cause slight stomach problems and dizziness, but it you increase slowly you will be ok. And the side effects go away with time. It is much easier tolerated then narcotics.

I hope that helps. Please feel free to throw any more questions my way. I'm sure everyone finds unique combos for them.

Oh, and thanks for the good wishes! My xrays look great, mri looks fine. It's one of those catch-22's. I'm happy not to have obvious problems showing up, but frustrated that my pain source is indeterminable at the moment! I think the problem is my SI Joint, and I'm getting an injection there soon.

_springchicken

Hi,

Thanks for your reply. (smiley) I'm SO happy to hear that your follow-up went well. I think you're right - it sounds to me like it is the SI joint and the injection should help big time!

The trouble with Tylenol, as well as a lot of medications and a lot of food, too, is that I get what I call "acid stomach." Shortly after taking a Tylenol, it feels as if the lining of my stomach is being eaten away. I have a lot of problems with acid reflux and my go-to drug used to be an over-the-counter called Pepcid Complete. It has the Pepcid component in it (the longer-acting stuff that people with reflux take every day for weeks) plus it has either calcium or magnesium (or both) which is basically what Tums or Rolaids has in it. So, with Pepcid Complete, you get the quick anti-acid action of a Tums plus the long-acting benefit of Pepcid. I've lived on the stuff for several years. I've tried several two-week (I think that's right) courses of Zantac, Pepcid, and all of that type of over-the-counter stuff. It does help me and I can eat what I want while doing that. But, you're only supposed to take it for a couple of weeks at a time. After I stop taking it, in a few days, I'm right back to "acid stomach" again, so I turn back to the Pepcid Complete.

So, that's my trouble with Tylenol. It just causes increased stomach acid, which ends up eventually in my throat. I've elevated the head of my bed (can't believe this would help, but helped a LOT) and am trying to eat low-acid foods. Truly, I've probably just wrecked my gut taking Motrin for 20 years. l had a colonoscopy and upper endoscopy in April, and I have gastroesophageal reflux disease and a hiatal hernia, so lots of stuff bothers my stomach. Since surgery, I haven't been able to tolerate the acid from the prune juice, and I LOVE prune juice. My stomach was already problematic, and I think all this medicine in the last two months has wrecked it even further. About a month ago, I vomited after eating a slice of whole wheat bread with olive-oil margarine. I'm probably going to have to get back on a 14-day course of Pepcid to try to fix this (yay.....more pills!). LOL

Oh, and by the way, my mother is allergic to Tylenol. We also found out the hard way a year ago in July that she is also allergic to NSAIDS (Aleve). I gave her an Aleve in a restaurant and within five minute she went anaphylactic with complete circulatory and respiratory collapse. I broke all of her ribs giving her CPR. And, just to mention my faith in the medical community here again....the pain medicine they discharged her on for the rib pain? Tylenol with Codeine. Not so LOL - at least I was there when they were going over her discharge instructions. Her admitting physician actually got mad because he had to walk back across the street and write another script for a different narcotic....like he didn't remember her reason for admission? I swear to Pete.

Anyway, I plan to taper off everything and I guess stick with the Percocet and Zofran (and start a 14-day course of one of the acid reducers) since soon enough, Tylenol will be my only option for pain. What I wouldn't give for a couple of Motrin right about now. And, you are right - I am stuck in a feedback loop that I'm not sure how to get out of. Everyone seems to be having good luck with the Neurontin. I'd like to try it but I'm not going to add it in to everything else I'm taking until I drop one or two other things.

I feel lucky because honestly, the postop pain is less than the preop pain, so I'm grateful. There are just a whole lot of things I have to relearn now, like how to sit for more than a couple of minutes. That's been another big problem - there is nowhere comfortable to sit in my house. The furniture is all too low and squishy, the backs of all my chairs are sloped...my most comfortable spot is in bed, and I'm spending way too much time back here. (smiley)

Thanks again for your helpful reply! Big hugs!
Fifa

fifa
01-08-2015, 12:20 AM
Hi Fifa, I hope each day brings improvement. Pain management is great. It seems that these doctors understand medications and the side effects so well. They also can offer other suggestions for pain. I found increased walking was part of the key to getting some of this under control. It increases good feelings and helps to relax the muscles. I too lost a lot of weight and only part of the weight came back through time. I mean years. Also even forcing yourself to get out each day, helps with mood and that helps everything else.
I am glad your father is doing well, but cervical fusion is easier than these long fusions of the spine. The cervical spine only holds up the head as compared to holding up the whole body. In the cervical they put these little plates and screws. The incision is smaller also. I had my cervical done after the spine . 6 weeks ago , I had the cervical increased one level. So I am still adding on to the fusion basically it is c3 to pelvis. I hope everything continues to improve for both of you.

Thanks, Jackie - you're very kind. (smiley) You are right about the cervical fusion being easier, but I can't help be jealous of his nearly pain-free status. LOL I'm just grateful he's still with us and not paralyzed. He really took a heck of a fall - right through the glass shower door, and wedged himself between the tub and the toilet. Could have been so much worse.

I'm hoping the easing of that stress will benefit me, too. I can't tell you what it felt like to leave my two 80-year-old parents alone in that hospital room while I headed off to St. Louis for my own surgery, knowing full well it will be a year before I can help them finish their move or do anything strenuous for them to help them. It was awful. And, since my mom doesn't drive, rather than stay here at my house (a mile from the hospital where dad was), she had relatives driving her back and forth daily from their home town, an hour away. It just wasn't easy to leave them, and I wanted to cancel my surgery so badly, but we took a family vote and I lost three to one. LOL

It's two below zero right now, but I'm heading outside for a bit to see if I can see the comet that is supposed to be out there somewhere. It has been way too cold for me to walk outside much, but I really have to get going on that.

Thanks again - big hugs to you!
Fifa

fifa
01-08-2015, 12:33 AM
Sorry i forgot to add this. I found out not to force food. Basically not to eat unless I was hungry. It avoids nausea . I use to just throw up the food that would just sit in the stomach. Then eat when I was hungry and I would be alright. Also, I just read on my paperwork, that fentanyl can cause urination problems. Maybe other pain meds can too.

Hi,

Thanks, Jackie. I'm with you on not forcing the food. Everyone on here will probably tell me I'm wrong, but I'm barely eating. I just can't. I'm drinking a couple of large glasses of soy milk, which has lots of calcium and protein and other good stuff. I'm eating those little individual servings of fruit (Dole sliced peaches, pears, and something "cherry," I don't remember the name). I've had some frozen vegetables called "steamfresh" maybe by green giant - I nuke a package of peas or broccoli and can get through about half of one of those packs. I haven't found any kind of meat that sounds good to me at all. Hubby got me some ham salad and some chicken salad, but both caused instant stomach acid. I've been eating small salads. Tried one with vinegar and olive oil (my favorite), but again, the vinegar was instant stomach acid. I used ranch dressing on the other one and did much better. What the hell??? Oh, and I know I've mentioned it before, but Bob Evans makes these heat and eat real mashed potatoes, and I've been living off those. They are warm and comforting and don't mess with my stomach. I have a pack of sweet potatoes in there that I might go heat up right now.

I'm not on Fentanyl. I was hoping they would send me home on a patch, but they didn't. Probably a good thing.

You know, I just want one good pain pill and one good nerve pain pill and that's it. I can handle the rest. This being so drugged is just ruining me. I just yelled at my wonderful husband again - that tends to happen when it has been eight hours without one of the three I'm taking (don't know which one) - Percocet, Tizanidine, or Valium 10 mg. I take these supposedly every six hours. I was trying to lengthen the time between doses, but I get either completely irrationally angry or cry like a baby.

How do/did you all wean off this crap????

Fifa

fifa
01-08-2015, 12:42 AM
Fifa,

Gabapentin on top of helping with nerve pain is also helpful for mood. Only problem with it -- I tried it briefly for nerve pain unrelated to the scoli is that it made me feel very sleepy. Not everyone experiences this though.

Maybe try it at night? I don't think there's extended release gabapentin, so you could try at half dose initially and see how that works. It might help keeping the ups and down of emotional wave you are experiencing a bit smoother.

In terms of zofran, it's works so well for nausea and when I was taking it regularly I had to -- because of a chemo drug making me nauseous quite frequently. The chemo drug dehydrated me and zofran gave me constipation on top of that. I'll avoid zofran now if there are other choices. I figured at the hospital I wasn't going to risk it since I was already experiencing sluggish bowels and haven't had a bowel movement when the nausea hit.

Hi, there -

I think I'm going to try it tonight - cut the doses of everything else in half. I'll do a bunch of research before that happens, but I'm pretty sure i was told i could add the gabapentin to all the other prescriptions the ortho group had prescribed (Percocet, Valium, Tizanidine, Zofran, and a couple of others I didn't even fill). Maybe that's the answer. I have to do something. I feel like I'm losing my mind here. Seriously. I know tons of people who would pay good money to feel this out of it, but I'm not somebody who likes to be out of control, so I'm just no longer "enjoying" being pain free if it also means I'm psychotic/neurotic at the same time.

I'm only taking the Zofran as needed (which is how it was prescribed), so maybe if i stay away from the acid food and the Percocet with Tylenol, I won't need it.

Will keep you posted. Thanks! You had me at "helpful for mood." LOL

Fifa

Irina
01-08-2015, 12:44 AM
Hi Fifa,

Speaking of chairs... Do you have patio furniture? My favorite chair immediately post op was an old and ugly patio chair. It had arm rests, tall and straight back. With an addition of a cushion, it was the most comfortable chair for me back then. If you don't have something like that, may be you can borrow it from family or friends? Basic kitchen chairs were fine too.

PeggyS
01-08-2015, 04:22 PM
Oh my goodness, Fifa! You have been through the wringer! Thank you for writing the detailed descriptions of the poop issues. I'm so sorry you had to go through that, but it puts my constipation into perspective. I was getting worried about all the crazy positions I was putting myself in, just to get relief. I'm on a regiment of Lactulose & Miralax.

I'm so happy for your dad and for the peace of mind it gives you to have him home with your mom. I helped my mom (85) move in August. I worked hard to get her unpacked & to organize her garage. She kept telling me to stop, but I kept thinking it'll be at least a year before I can attempt any heavy duty stuff.

As for chairs, I put a 2" thick foam pad on the seat of my upholstered chair & one up & down for my back. It makes me sit more forward so that when I want to lean back, I'm not leaning as far. Tonight is my first outing other than church, so it'll be interesting to see what type of chairs are available at the home of our book club hostess!

I didn't want to take gabapentin & I can't remember why. The rehab dr talked me into a very low dose of 10 mg. I was on it for about 4 weeks. I didn't notice a difference before or after.

It does sound like a pain management dr will be the next best step for you. Those meds & their side effects need to be evaluated & coordinated to fit your specific needs! Being allergic to Tylenol knocks out a lot of options for you.

Take care. You've been through a lot, try not to measure yourself against where you 'think' you should be at this point in your recovery. You need to factor in all the bowel/tummy/medication problems that kept you from progressing. You'll get to where you want to be. We're all different & that's why this forum is so valuable!

Hugs & prayers, Peggy

fifa
01-09-2015, 09:07 AM
Fifa,

Gabapentin on top of helping with nerve pain is also helpful for mood. Only problem with it -- I tried it briefly for nerve pain unrelated to the scoli is that it made me feel very sleepy. Not everyone experiences this though.

Maybe try it at night? I don't think there's extended release gabapentin, so you could try at half dose initially and see how that works. It might help keeping the ups and down of emotional wave you are experiencing a bit smoother.

In terms of zofran, it's works so well for nausea and when I was taking it regularly I had to -- because of a chemo drug making me nauseous quite frequently. The chemo drug dehydrated me and zofran gave me constipation on top of that. I'll avoid zofran now if there are other choices. I figured at the hospital I wasn't going to risk it since I was already experiencing sluggish bowels and haven't had a bowel movement when the nausea hit.

Good morning!

As of last night, I ditched the Valium. Yes, I'm well aware that I'm supposed to wean myself off of it (they had me on 10 mg tabs four times a day). I wasn't taking it that often, plus 10 mg tabs to me is quite a lot. All I've ever had is 5 mg tabs. Anyway, I was also prescribed Baclofen and gabapentin (I don't remember the milligrams on either med). The dose on the gabapentin/Neurontin, though, was to take one capsule on the first day, two on the second day, three on the third, etc., until I had worked my way up to nine capsules daily (that was my upper limit). Since I was prescribed four different muscle relaxers (baclofen, gabapentin, tizanidine, and Valium), I decided to try a gabapentin yesterday since I had ditched the Valium. I slept for 12 hours straight after I took it, but I have to tell you, I felt pretty great. I'm also backing way off on the Percocet. Frankly, I'm backing off everything except the Milk of Magnesia. Unless my records are wrong (I may not have written down my last BM), it appears the last one was Sunday. So, once again, I've probably let that go too long. Took a dose of MOM yesterday morning and just took another one about 15 minutes ago. I hadn't really taken one before yesterday because (a) I was finding that every time I had to urinate, I also was pooping a tiny bit. I realized yesterday that the tiny poops had stopped, so it is time to get back on the MOM and get things going again. I had hoped that a daily or every-other-day dose of MOM would keep me regular, but according to my records, that hasn't happened. I do feel right this second that I could go soon. I just made a pot of coffee - that is my usual laxative (LOL). Oh, but it worked best with a couple of cigarettes, which I obviously can't have anymore either.

Anyway, I'm anxious to try the gabapentin today without the Percocet in my system and see what happens. I can tell you that I feel very very tired yesterday and today, and my back is sore, but in a manageable way (much like I managed it preoperatively). The gabapentin almost immediately took away the horrible leg pain/muscle spasms that I was having - much better than the Valium did.

I also ordered up a cane from Amazon just to sort of help me outdoors with stability. My neighborhood is 50+ years old, and the sidewalks are all cracked up and "heaped up" in places, and trying to walk out there with the walker is just too much. I end up carrying the walker across the potholes and can't push it over big cracks in the sidewalk, so it really is more of a burden outside than a help. I'm not terribly unstable - I just feel like I want something to hold onto when I walk. The cane should be here today, so I'm anxious to try it. The weather is supposed to warm up here in the next couple of days. I think getting outside and getting some exercise will help a lot.

The last thing I can say is that nearly as soon as I quit taking the Valium (probably 12 hours had passed since my last dose when I decided to put it away), the depression eased up a little and I haven't have a crying spell since. Also, the weird urinary slow stream/intermittent stream is much better, too.

I think the Valium was evil and did me more harm than good. Will keep you all posted. And, if it seems like I'm having the withdrawal symptoms mentioned on Google, I'll take a half a tablet and keep trying to wean away from it. I printed out the withdrawal symptoms.

I'm with you on the gabapentin...maybe that is what improved my mood, but I tell ya, I got pretty dizzy with it and immediately sleepy. I think if I could get used to having it in my system, it would be very helpful. I doubt I'll go to two tablets tonight as directed, but just take one until it seems like it isn't bothering me so much, and increased from there. I just can't been sick, sad, moody, and sleepy all the time right now. I started back to work on Monday (only up to 20 hours per week at my discretion with seven days a week to get the hours in) and I really can't sleep for 12 hours a day and get my work done, too.

Hang in there - hope you are doing well. You've had some great advice, and I thank you!

Hugs,
Fifa

fifa
01-09-2015, 09:25 AM
Hi Fifa,

Speaking of chairs... Do you have patio furniture? My favorite chair immediately post op was an old and ugly patio chair. It had arm rests, tall and straight back. With an addition of a cushion, it was the most comfortable chair for me back then. If you don't have something like that, may be you can borrow it from family or friends? Basic kitchen chairs were fine too.

Hi, Irina -

It's funny that you mention this at this moment in time. I got up a couple of hours ago (I'm having some trouble with insomnia) and decided to do a couple of small things around the house. I have this beautiful nearly new fabric recliner that I bought just for this purpose, which then my doctor's nurse told me I couldn't use because it was too "slopey," for lack of a better word. The best way to describe what they want me sitting in is to keep my body in a perfect "L" shape. Back straight up against a straight back of a chair, bent just at the hips with the feet either on the floor or on an ottoman. Just keeping the body in an L shape. So anyway, I made some coffee and I noticed an antique Ethan Allen chair with two hard cushions i it (one for the bottom and one for the back) - it's a wooden chair with arms and two cushions. I had tried every combination to make that chair work for me because it is an L shape and I thought it would work, but I could never get comfortable in it. Anyway, I took the back cushion out of it, which is just an "old school" piece of fabric-covered foam about 2-3 inches thick, and I put it in the back of the recliner. It is PERFECT! I just need to get the hubby to drag the ottoman over in front of it and I think it will be great. I'm not doing so well with my legs "dangling." Even sitting on the toilet for a few minutes makes my legs feel like they are going numb, and then after I lie down to try to "un-numb" them (sorry - that's not a word LOL), then they begin to ache and ache for literally hours. It is the strangest thing.

Unfortunately, we have kind of a modern house, and our kitchen chairs are actually padded leather stools that go with a bar-height round table. Hope that makes sense. The chairs are comfortable, but they have no back on them at all. I sat on one the night my hairdresser came to shave my head (since they shaved only parts of it to attach the halo for the fusion), and I had to take multiple breaks.

Thanks for thinking of me! All of our patio furniture is sloped, too (as in adirondack chairs). What's with my family? Must every darn thing be SLOPED????? LOL

Thanks for the post - hope you are well.

Hugs,
Fifa

fifa
01-09-2015, 11:43 AM
Oh my goodness, Fifa! You have been through the wringer! Thank you for writing the detailed descriptions of the poop issues. I'm so sorry you had to go through that, but it puts my constipation into perspective. I was getting worried about all the crazy positions I was putting myself in, just to get relief. I'm on a regiment of Lactulose & Miralax.

I'm so happy for your dad and for the peace of mind it gives you to have him home with your mom. I helped my mom (85) move in August. I worked hard to get her unpacked & to organize her garage. She kept telling me to stop, but I kept thinking it'll be at least a year before I can attempt any heavy duty stuff.

As for chairs, I put a 2" thick foam pad on the seat of my upholstered chair & one up & down for my back. It makes me sit more forward so that when I want to lean back, I'm not leaning as far. Tonight is my first outing other than church, so it'll be interesting to see what type of chairs are available at the home of our book club hostess!

I didn't want to take gabapentin & I can't remember why. The rehab dr talked me into a very low dose of 10 mg. I was on it for about 4 weeks. I didn't notice a difference before or after.

It does sound like a pain management dr will be the next best step for you. Those meds & their side effects need to be evaluated & coordinated to fit your specific needs! Being allergic to Tylenol knocks out a lot of options for you.

Take care. You've been through a lot, try not to measure yourself against where you 'think' you should be at this point in your recovery. You need to factor in all the bowel/tummy/medication problems that kept you from progressing. You'll get to where you want to be. We're all different & that's why this forum is so valuable!

Hugs & prayers, Peggy

Hi, Peggy -

You are absolutely the best and thank you for saying what you said about measuring myself against where I "think" I should be. That truly is a big problem for me. I know this was a totally different, MAJOR back surgery, but I keep thinking back to 1987 and where I was at eight weeks out, and it is depressing. Plus, and I really hate to say this in public, but my husband is taking great care of me but the house is absolutely filthy, and it is driving me crazy. I can't drive anywhere - can't really use my walker out of doors - and basically am just having a private pity party that I'm not enjoying at all. I'm finding I'm more able to be positive just having cut out the Valium, but honestly, trying to stay positive when I'm not feeling positive (for me) is like trying to smile through the pain and keep a stiff upper lip like I had to do preoperatively. It's exhausting.

It's nerve wracking and insanity-inducing to not be able to have a BM when you want, to not be able to sleep, to sit, to work, to walk.....sometimes I think I was crazy to have had this surgery, but I've read a lot of other people on this forum say the same thing (that they questioned their decision). I'm just impatient and nothing is happening fast enough for me.

I remember Ed saying something in a post about being in the hospital and getting really angry, and that a nurse calmed him down. I have to say that I'm having quite a few angry moments, too, probably not all medication related (although I do believe the Valium is to blame for most of the anger and most of the uncontrollable sobbing - I feel better since I stopped it). I know my "normal" self will come back to me someday, but I'm just tired of seeing the dog water dish empty and knowing I can't pick it to scrub it before I refill it. Honestly, mostly what it is is that I'm tired of asking for help....help that I know I need. I have to ask my poor husband for something several times and hour, and frankly, I'm sick of asking him and feel like he's probably sick of being asked. He's been very sweet and has gone above and beyond helping me. I just don't want to have to ask anymore. Hope that makes sense.

I didn't want the gabapentin, either, or the baclofen, and certainly not the Nucynta (the one that may make you cease breathing without warning and shouldn't be used if you have a paralytic ileus). LOL I probably sound like a paranoid freak, but I just can't believe the amount of medications I came home on, and every time I called with a problem (like constipation or nausea), then I got two or three more scripts. I have a VERY large shoe box (it's actually a box that a pair of boots came in) and it is FULL of medicine. I shouldn't be complaining, but I figured I'd come home on a pain, muscle relaxer, and a laxative. But four muscle relaxers? Three different pain pills? Now, I'll take responsibility for the laxatives. LOL I was only prescribed one stool softener, but after that first 5 1/2 hour of impaction after the ileus, I sent hubby to the store with a list after having done a whole lot of internet research. So, those 12 laxatives are all my fault (as is the prune juice).

I just said in a previous post that I hadn't had a BM since Sunday per my records, which may be wrong, but I took a dose of MOM last night and took another a couple of hours ago, and just a fairly liquid BM. The MOM is all I'm going to use from here on out. I think if I stay on an every-third-day regimen, I'll be fine. I've found that it is easy for me to get too much of it. I've had two liquid BMs this morning and feel like I could go again pretty soon. Life is all about finding that balance, isn't it??? LOL

Hubby just got back from the grocery store. I had him buy some pear juice. I would like to try it after reading several posts here. I love prune juice and think I could easily manage my bowels with just a small glass per day, but the acid is just killing my stomach. The pear juice may do the same thing, but I did want to try it. I'll take it easy. LOL

I'm hopeful to get off the pain meds entirely and just use muscle relaxers when needed, but we'll see. I'm doing pretty well right now, but back to moving really slowly. With the drugs, I was getting out of bed easily and going up and down the stairs pretty easily, but I've noticed now I'm moving slower. Honestly, I don't care about that. I just want my sanity back. If I can get my brain unloaded from all the chemicals, I feel like I can yoga/meditate again and push through it. The really rough postop pain has let up quite a bit. What I have now is best described as soreness/aching/stiffness. Oh, I have searing pain if I move the wrong way, but what I have right now seems manageable. I may be deluding myself - the Percocet and oxycodone and everything else is probably still in my system. We'll see.

I hope you have a wonderful time tonight and can get comfortable. I pulled a foam cushion out of an old wooden chair and put it in the back of my recliner, and that seems to have done the trick. It will be nice to be able to leave this room after eight weeks and go look at some other part of my filthy house, as opposed to staring up at my lovely 1970's popcorn ceiling. Swear to Pete, when I get better, I'm stripping the popcorn off all the ceilings in this house. Geez.

Talked to my mom and things are going well with my dad, so that makes me very happy. There are still a lot of things at the old house that need to be moved, and the house desperately needs to be cleaned, but she doesn't want anyone except one of the four of us to vacuum it because of the state it is in. I'm fairly certain my old bedroom hasn't been vacuumed in probably 15 years (seriously) - it was just used for storage when I moved out. Anyway, she's so embarrassed that she won't hire anyone to come clean it. If she's looking at me, it will be April before I try any of that stuff, and believe me, I'll be vacuuming my own hideous house before I take on someone else's. Selfish, I know, but necessary. (smiley)

Lots of love and hugs to you. Again, I so appreciate what you said about measuring myself against where I "think" I should be. Honestly, I'm just upset because I don't feel like picking up a vacuum yet or doing anything other than resting and doing a little bit of work (from home in bed) so I can get a paycheck. That BMP money isn't going to come easy. LOL I still haven't gotten a bill for it, but I'm sure I will....as the worst possible time. LOL

You take good care of yourself. I can't believe how well YOU are doing after what you've been through. You had twice the fusion and instrumentation and hospitalization that I had two weeks before me. Do yourself a favor and have someone else do the driving, okay? Don't run over any trees on your way out of the driveway!!!! LOL

Talk to you soon. Thanks again for your support!
Fifa

Lizardacres
01-09-2015, 04:27 PM
Fifa,

Your poop thread should be a sticky for the Surgical First Time forum, it was absolutely brilliant. But what a nightmare for you! You are sounding so much stronger, like you have taken charge of your recovery and no longer a victim of the side effects of the medications you have been taking. I agree with you about the valium. I have been on klonazepam for many years for muscle spasms and it is very similar to valium; same class of drugs and duration of action. It is definitely a doggy downer. A neurologist once tried me on a different drug in this class (can't remember any more which one), it was stronger but shorter acting. After taking it for only 24 hours, I became profoundly depressed. Even though I stopped it right away, I ended up on antidepressants to fix it. I only take 0.5 mg of the Klonopin daily now (it's about 10x the dose of valium so equivalent to about 5 mg Valium), which is a small dose. If I get into a round of terrible spasms, I can double the dose for a while and get away with it but I can't do more than that. I find this class of drugs to be very depressing. I think all post op patients should be told this and warned of the potential for depression from this class of drugs at high or even moderate doses.

But I think your plan to take a little of this and a little of that is a good one. The different methods of action of the different classes of drugs work synergistically to help. Unfortunately, you have to be brave and experiment as we all react differently to drugs. Only you can find the best combination. It's good you have a lot to choose from. Sounds like the gabapentin has been a plus. The key is to make one change at a time and increase and decrease dosages slowly to avoid withdrawal. If you come off a high dose of valium cold turkey, you can have seizures.

susancook
01-09-2015, 11:43 PM
Fifa, Re: your husband not being great at cleaning and it is bugging you......do you have a good girlfriend that will come over and help? Don't be afraid to reach out for help. You would help your friends, right?

Re: poo. We all took it for granted before surgery, and for many of us, it was one of our biggest challenges!

You are a survivor!

Susan

leahdragonfly
01-10-2015, 10:58 AM
Hi Fifa (Rhonda),

Have you tried Miralax? It doesn't produce the liquid effect that Milk of Mag produces. I stayed on it for awhile once I was off pain meds and it was just right.

It sounds like you are really doing well, and I can tell from reading your posts you have made a whole lot of progress! As far as the stiffness/soreness you describe…I am really familiar with that and found that there was really no medication that helped with it. Movement was the best thing, even though it hurts at first. At 8 weeks I think I was just taking extra strength Tylenol 3x/day and a very occasional 1/2 Tramadol. I really don't tolerate narcotics well so got off them early. My surgeon's PA told me that you will come to a point in the first few months of recovery where you realize the narcotics don't help, and now I realize what she meant. For me frequent short walks and moving around helped a lot.

Keep up the good work! In another month you will be amazed to look back at your progress.

Irina
01-10-2015, 11:06 AM
Hi Fifa,

May be you can hire a house cleaner, if money allows? I never had one and hired a cleaner before the surgery because I didn't want my husband do it. Plus, I would not be happy with the way he cleans, anyway. I thought I would keep my cleaners for a year after the surgery and then start doing it myself. I still have my cleaners almost two years out. I am perfectly capable of cleaning by myself, but I got spoiled and don't want to do it anymore. These are money well spent, and you'll be helping someone by giving him/her a small job.

fifa
01-12-2015, 10:59 AM
Fifa, Re: your husband not being great at cleaning and it is bugging you......do you have a good girlfriend that will come over and help? Don't be afraid to reach out for help. You would help your friends, right?

Re: poo. We all took it for granted before surgery, and for many of us, it was one of our biggest challenges!

You are a survivor!

Susan

Hi, Susan -

Yes, I have several great girlfriends who would be more than happy to come over, but I'm embarrassed to ask for help because my husband works from home, so it doesn't seem "fair" to ask for help for something that we should be doing ourselves. In the next day or so, once I get some of this mess picked up by myself, I'm going to hire a Merry Maid or someone that doesn't know us to come over. That's not to throw hubby under the bus - he is here working during the day and I started back to work very part-time from home last Monday. Also, just like other people I know who have housekeeping help, they all pick up and straighten up before the housekeeper comes over. Guess lots of people are embarrassed by the messes they all leave. LOL

Yes, the house right now is my biggest challenge. I know that, come springtime, keeping my fusion and fixed pelvis out of the yard is going to be an even bigger challenge. I need to get one someone's list for help right now. If I wait until closer to spring, all the regular slots will be filled and no one will have time to fit us in, and I won't be able to stand all the perennials trying to come up through a foot of leaves (we live on a pretty heavily wooded lot).

I think what bothers me most right now is just the loss of independence. My whole life, I've never asked for help from anybody for anything. Sure, I've hired a tree company to remove giant trees, hired a guy to pour concrete, a guy to tile our basement, etc., but I would never consider a yard worker or a housecleaner. I even Googled how to do plumbing and can do most of those jobs myself, or I could. For someone like me, having to hire someone to clean my windows feels like failure on my part. Maybe I'll be able to do things myself one day, but right now it just makes me sad and quite angry that I can run the damn vacuum by myself. Maybe everyone goes through this - I don't know.

I have a very hard time right now focusing on the positives and eliminating the negatives, or at least finding solutions for them. My husband is doing so much right now that I hate to ask him to do anything else. I'm still trying to get over the fact that he had to give me enemas and insert suppositories for me. We've been together for 25 years, and we both use the bathroom behind closed doors. We don't pass gas in front of each other. Yes, we are strange.

This has been very hard on me mentally. My biggest motivator in life so far has been someone telling me "you can't." I take that as a challenge and then try to prove them wrong. Now, I'm in no position to do this, and I don't know how to handle it. Again, a lot of what I perceive as my negative attitude, I believe, is all the medicine.

I will say that I started gabapentin a few days ago and it really seems to be helping. I'm to take one on day one, two on day two, etc., until I've reached my max of nine pills on day nine. On Saturday, I slipped off the end of the bed (a fall of just a couple of feet) and landed flat on my butt with my right leg underneath me. My husband was out walking the dog, so I was like a turtle on its back. It took me 45 minutes of maneuvering (yes, there was some bending and also some twisting), but I finally got back up to where I was able to pull myself back into the bed. I took a Percocet, which did nothing, and then I took a baclofen and a tizanidine. Still nothing. My muscles on the left side were spasmed from my left shoulder-blade down to my left heel. So, I took a gabapentin. I started feeling a little better after a couple of hours, but still hurting so bad, so I took my second gabapentin (it was day three - I could have had three of them but up to this point have only been taking one per day). I can't image taking NINE in a day. Anyway, I took the second gabapentin and curled up in bed. Needless to say, I lost the entire day yesterday. I slept for 16 hours straight and woke up about 9:00 p.m. last night (have been up ever since). I woke up feeling great. This is the second time now I've used the gabapentin, and I woke up feeling great both times. I'm going to try to wean from everything but that and only try to use one or maybe two (if I'm desperate) per day. They seem to be working well for me. The fusion pain and surgical pain seems to be pretty tolerable, but the nerve pain is something else.

I finally have some hope, especially now that the Valium is out of my life. I have a hard time with meds - a lot of them don't affect me the way they are "supposed" to and/or like they affect other people. Meds that put other people to sleep will speed me up to where I can't sleep for days. Stuff that makes other people "speedy" will put me out for a day. So, I know it is the same for everyone, but the meds are a difficult balancing act...trial and error.

So, I just took a gabapentin because the nerve pain is starting to get to be more than I can handle. I'm going to take a hot shower and crawl into bed. I have a hard time (stiffness) if I spend more than an hour or so in bed in one position. I'm on my back a LOT when I'm in bed, and then I'm terribly stiff when I try to get up (part of the reason I slid off the bed Saturday). The worst stiffness is first thing in the morning when I've been in bed (in the same position) for several hours. I've heard others complain of morning stiffness, and they ain't lyin'!! (smiley)

Sorry for the long response to your question. I hope to get some help in here soon or just not leave the bedroom anymore, which is the cleanest room in the house.

Talk to you soon - hugs to you!
Fifa

fifa
01-12-2015, 11:19 AM
Hi Fifa,

May be you can hire a house cleaner, if money allows? I never had one and hired a cleaner before the surgery because I didn't want my husband do it. Plus, I would not be happy with the way he cleans, anyway. I thought I would keep my cleaners for a year after the surgery and then start doing it myself. I still have my cleaners almost two years out. I am perfectly capable of cleaning by myself, but I got spoiled and don't want to do it anymore. These are money well spent, and you'll be helping someone by giving him/her a small job.

Hi, Irina -

I couldn't agree more (see post below to Susan). I wouldn't be happy with the job my hubby did, either, although I did stop berating him years ago for not doing it "my way." It led to a happier home to just do those things that were unsatisfactory in my eyes myself. There weren't many, but I'm VERY particular about the bathroom and the kitchen in particular. I wash my dishes (or rinse them, at least) in water so hot it burns my hands. Been doing it that way for so long that I barely feel the burn. I just feel like they get sanitized better that way. Hubby washes and rinses in lukewarm water, which makes me squeamish. So I have a tendency to re-wash things before I use them. He also has a tendency not to notice that the toilet bowl needs to be cleaned, and that COMPLETELY grosses me out. So, rather than b*tch at him, I do it myself. In fact, that is the rule in this house that has led to a pretty happy marriage..."if it bothers you, then you clean it up." Unfortunately, that little agreement didn't come with any caveat for what happens when one of us is disabled. I'll add that to to the prenup for husband number two, I guess. LOLOL

Big hugs - hope you are feeling great!
Fifa

fifa
01-12-2015, 11:47 AM
Fifa,

Your poop thread should be a sticky for the Surgical First Time forum, it was absolutely brilliant. But what a nightmare for you! You are sounding so much stronger, like you have taken charge of your recovery and no longer a victim of the side effects of the medications you have been taking. I agree with you about the valium. I have been on klonazepam for many years for muscle spasms and it is very similar to valium; same class of drugs and duration of action. It is definitely a doggy downer. A neurologist once tried me on a different drug in this class (can't remember any more which one), it was stronger but shorter acting. After taking it for only 24 hours, I became profoundly depressed. Even though I stopped it right away, I ended up on antidepressants to fix it. I only take 0.5 mg of the Klonopin daily now (it's about 10x the dose of valium so equivalent to about 5 mg Valium), which is a small dose. If I get into a round of terrible spasms, I can double the dose for a while and get away with it but I can't do more than that. I find this class of drugs to be very depressing. I think all post op patients should be told this and warned of the potential for depression from this class of drugs at high or even moderate doses.

But I think your plan to take a little of this and a little of that is a good one. The different methods of action of the different classes of drugs work synergistically to help. Unfortunately, you have to be brave and experiment as we all react differently to drugs. Only you can find the best combination. It's good you have a lot to choose from. Sounds like the gabapentin has been a plus. The key is to make one change at a time and increase and decrease dosages slowly to avoid withdrawal. If you come off a high dose of valium cold turkey, you can have seizures.

Hi, there -

I also think this particular post of yours should be added as a sticky. I, for one, didn't realize that the meds could be trial and error at all. I just did what I was told. We came home with SO many prescriptions, each with 90 or so pills, and I took every one of them as prescribed. Those were just the scripts from the ortho group at Wash U. I had a script here that my primary care physician had written for Nucynta, but after we Googled it and read some of the side effects, we refused to use it (something about "may make you stop breathing" and also "should not be used if you have a paralytic ileus," which I was discharged from Barnes with, so not knowing if it had completely resolved, we just skipped that junk. Anyway, we had all of these prescriptions, "take this every four hours, take this every six hours, etc." My poor husband had an alarm set so he could give me every pill exactly when it was due. I never once thought about "gee - maybe I don't need this oxycodone right now," I just took whatever he handed me. He kept a log of all the meds and combined the ones that could be combined. So, whatever the Valium dose was (one every four to six hours, maybe?) I do know that it was a 10 mg tablet.

Yes, I should not have stopped taking the Valium cold turkey, but I had been skipping doses for probably a week before I just stopped it. No seizures so far and truly, I don't miss it. The uncontrollable angry outbursts and uncontrollable sobbing stopped almost immediately (not that I don't still cry - I just usually now have a reason). LOL Anyway, I had a feeling (after Googling) that it was the culprit. Plus, I just had to let some things go because I had four bowel impactions that took forever to remove manually/digitally myself, an I just could NOT go through that again. If anyone had been in the house with us, they would have sworn I was in labor, and that is pretty much what it felt like. (frowny face).

I'm glad the clonazepam works for you. Valium (to me) is just evil. But, as I said above, my body just reacts differently than other people's bodies, or so it seems. Something that would put you out might keep me up for 24 hours, and vice versa. My husband is the same way, but the opposite of me. He can take a Sudafed and go to sleep for a whole day - I would be up running around like a crazy person. We're strange. LOL

Yes, I think the key to pain management is just trial and error. We should call it "practicing medicating." LOL Letting go of one thing at a time (weaning, of course) or adding one thing at a time, I think, is the way to go. Eventually, I think a person will hit on the right combination.

All I know is that there is no way I could have worked had I continued the regimen I was prescribed when I left Barnes. Also, this is week #9 starting today, and I just started the gabapentin that I came home with. I can't imagine being on everything I was on plus nine of those a day by now. I don't think they did a bad thing prescribing all of this - I think they think most of their patients have already been on some kind of drug management/pain management (whatever you want to call it). The ortho group here in town only gives scripts for really high-dose Motrin and Flexeril. Years ago (when I did transcription for them), I was told by one of my coworkers that if you were a fat smoker, they considered you "addictive" and wouldn't give you a narcotic. I can tell you that they never gave me one until four years ago when the second facet joint broke, so my spine was basically completely broken in that area. They scheduled me for emergency surgery because my spine was unstable. That's the first time since I had surgery in 1987 that they gave me anything other than Motrin and Flexeril for my back. I always found it ironic that they would schedule me for an epidural (or caudal) steroid injection or suggest surgery, and then send me home with 800 mg tabs of Motrin and some Flexeril, as well as six or eight weeks of physical therapy that was an SOB when you're in that much pain. So, I figure the Wash U folks thinks you've already been on every med under the sun, and that's not my case. All I've used in the last four years is a buttload of Motrin and Lidocaine patches (and yoga and meditation). So, all this stuff I came home with, in my opinion, is way more than I'm used to and WAY more than my brain can handle.

So yes, trial and error is the key here, and I couldn't agree with you more. This is a really smart idea and should be a sticky.

Thank you - huge hugs to you!
Fifa

fifa
01-12-2015, 12:11 PM
Hi Fifa (Rhonda),

Have you tried Miralax? It doesn't produce the liquid effect that Milk of Mag produces. I stayed on it for awhile once I was off pain meds and it was just right.

It sounds like you are really doing well, and I can tell from reading your posts you have made a whole lot of progress! As far as the stiffness/soreness you describe…I am really familiar with that and found that there was really no medication that helped with it. Movement was the best thing, even though it hurts at first. At 8 weeks I think I was just taking extra strength Tylenol 3x/day and a very occasional 1/2 Tramadol. I really don't tolerate narcotics well so got off them early. My surgeon's PA told me that you will come to a point in the first few months of recovery where you realize the narcotics don't help, and now I realize what she meant. For me frequent short walks and moving around helped a lot.

Keep up the good work! In another month you will be amazed to look back at your progress.

Hi, Gayle -

No, I haven't tried Miralax, which is surprising to me - I have a whole shelf full of laxatives, suppositories, enemas - you name it. LOL Yes, definitely part of the problem is my lack of movement, most of which (I believe) was the Valium. I seriously had no will to even get up to shower. Zero energy, zero motivation - just depression that "this is the way I'm always going to be and I'll never get any better," uncontrollable angry outbursts at my poor dear (very tolerant) husband, and uncontrollable sobbing for hours for no reason. The Milk of Magnesia every third day (two tablespoons) seems to be the right balance. I had my husband buy some pear juice - I read the pear juice thread, so I've been warned. LOL The acid from the prune juice was killing my stomach, but now that I think about it, that was before they prescribed the Zofran, so maybe it wouldn't be so bad anymore. I'll have to try it. I prefer to treat things naturally if I can. Prune juice and All Bran used to take care of any constipation I ever had (oh, and a banana a day). My stomach has been so screwed up, though, I have hardly been able to eat anything.

The worst time of day for me is first thing in the morning. I wake up so stiff I can barely get out of bed. I'm hoping that gets better. I've noticed that if I stay in any position for a couple of hours, I get pretty stiff. I don't remember (or can't) roll over on my side at night. I go to sleep on my back and typically wake up on my back. But, if I spend several hours on my side, I have the same problem, so it doesn't seem to matter. The first thing I do in the morning is go to the bathroom, and I have just a terrible time getting down to the toilet - so painful. I walk around a bit afterward, which seems to help. If anyone has any suggestions, I'd love to hear them.

You're right - I'm at the point where the narcotics don't help very much. Frankly, they never did, really. In my opinion, they just "shut off" the part of your brain that cares that you are in pain - they don't make the pain go away. Hope that makes sense. You're still in the same amount of pain, but you no longer care. The muscle relaxers and nerve medicine is what is helping the most right now. I was three inches shorter on my right side than my left - to the point where my right ribcage was sitting on my pelvis. When I asked our ortho nurse, Megan, how they stretch those muscle three inches in a matter of hours, what she said was, "you're going to wake up and hate us, and you're going to hate us for a realllllllly long time." LOL So, I think things are still stretching and angry about having to do so. My chief complaint was unbearable rib pain on the right side from the sternum to the pelvis, and I'm happy to report that this particular pain went away as soon as I woke up from surgery. So yes, I'm seeing benefit and I know I'm improving. I just wanted to be "better" by now. I'm awfully impatient.

I'm worried about what I'm going to do when they take the meds away. Tylenol REALLY upsets my stomach, but the Zofran that they prescribed has helped me tolerate more foods (I've been eating next to nothing because of nausea) and it also helped me tolerate the one script of Percocet they sent instead of oxycodone by mistake. I guess if I'm eventually to wean to nothing by Tylenol, I'll need to continue with the Zofran.

I've been writing a long time this morning, so it is time to get up and move a bit. (smiley) We had freezing rain here last night, so I guess I'll be doing stairs instead of going out and trying my new cane.

Take care and thanks for the great post!
Fifa

jrnyc
01-12-2015, 12:27 PM
hi fifa
i am so sorry things are so very hard right now and i hope
you feel better every day....until you feel good again.

there are A LOT of those husbands out there, apparently...
i had an uncle who died (at age 95) a few years ago....
one of my father's brothers....he explained it to me...
he said i was not using my brain....
he said
"do you think we don't KNOW we don't clean it as well...?"
then he winked at me.
he and my father were like that....the women just cleaned
stuff first, to avoid the annoyance of RE cleaning...

gentle hugs...
jess....& Sparky

fifa
02-10-2015, 01:29 AM
Hi, everyone -

It seems like forever since I've posted in my own thread. I've posted in several others, but have neglected my own. It seems like everything in my life right now is neglected in some way or another. I guess that is to be expected, but that doesn't mean that I enjoy it.

My pain is pretty well controlled and I've weaned down on some things and have completely stopped some things. I may have mentioned this before, but when we followed up with our nurse, I told her about the sobbing episodes along with angry outbursts. I had weaned off and stopped the Valium, which she told me to add back in because it was a "mood stabilizer." Oh, it stabilizes my mood, all right - makes me sad all the time. The sobbing stopped, but an incredible sadness took over, so I tapered and quit the Valium again.

The current regimen is pretty much an a.m. p.m. regimen - I take meds in the morning and round two of the same meds at night. The good news is that we tried just plain old regular Tylenol at 325 mg, and I've worked myself up in baby steps to where I can now tolerate two 500 mg caplets twice per day. I'm pretty proud of that - I've never been able to tolerate Tylenol before, and now I'm doing it without the Zofran tablets (after I found out from you all that they caused constipation!). So, I'm taking two 500 mg Tylenol morning and bedtime (four total per day), one 300 mg gabapentin morning and bedtime (total two per day), one 5 mg oxycodone morning and bedtime (total two per day), my nightly progesterone, and one weekly estrogen patch. I take one Soma per day, typically at bedtime, for muscle relaxation (it's an old script which I had removed from it's original bottle, so I don't know the mg). I have little need for the Zofran, but I do find I need it if I eat anything sugary. I can't tolerate sugar or carbonated beverages since surgery - don't know why, but I can't. Those cause instant indigestion and some actually cause vomiting. I'm using Peri-Colace (which is a stimulant laxative plus a stool softener) when I need it and also Milk of Magnesia when I need it, which seems to be at least once per week. I'm trying to remember to take my Vitamin D, calcium, and multivitamin, but those are in the kitchen so are easily forgotten (my routine pills are at the bedside, so they are easier to remember, plus pain kind of reminds you to take those). I think that is about it as far as meds.

So, at the three month mark, pain wise, I'm doing pretty well. Just in the last few weeks, dumb as it may sound, I know that I'm fusing. Maybe it was because I had been doing things that I didn't realize were not allowed (like getting down on all fours - I thought I was bending at the hips but actually was bending at the waist). The nurse scared me to death back in January when I saw her, and since then, I basically took to my bed and am not doing much of anything. I do try to walk, but I really want to do that outside (I'm SO tired of being in the house), so the weather hasn't allowed much of that. I find that I am terribly stiff when I try to get out of bed in the morning. I also have nearly zero tolerance for sitting. My bed is truly the only place in the house where I am comfortable.

Right now, I'm really fighting depression or at least just a lack of "hope." I've been sad the last few weeks because my mobility seems to be so much more impaired than it was. It is hard to explain, but I thought that the way I came home from the hospital was the way it was going to be, and I was excited about that because I had more mobility than I thought, and I was grateful. What actually was happening was that I was doing things that were keeping me from fusing, like bending when I thought I wasn't, twisting when I thought I wasn't (I leaned a lot, which I'm told is twisting), etc. Now that I've stopped doing those things, I find I can't do them anymore. I'm finding it harder to reach through/behind/around for toileting. I think a lot of this (the sadness) has to do with the medications, but that doesn't make it any easier.

My memory now is terrible, which I hope is medication. I can't remember things that happened before, during, and after hospitalization. I feel crazy. I feel like I have early Alzheimer's or something. I don't really want to be around anyone right now because it is maddening to not remember things that I've supposedly said or done (good things all). I can take my meds and then wonder if I've taken my meds. It is really strange. My mental state is just wrong, and again, I think it is probably the drugs, but I can't really wean off right now, so I guess the best I can do is just feel nuts. I sleep with a light on now and the television has to be on, too.

I'm also battling exhaustion. It seems like the smallest things are an ordeal. I know I'm just at the three-month mark, but I have to rest after a shower (I stay in there until all the hot water is gone - probably 45 minutes to an hour).

In a nutshell, I don't feel like myself anymore, and that makes me sad. I feel broken and crazy. I know from my undergrad and grad work that I'm grieving the old me, and I know that it is going to take time. I sneeze differently now. Lots of things are different now - too many things and some too intimate to mention here. For those of you who might suggest I confide in a friend, I have yet to find one that understands what this is like. No one I know has had any surgery of this kind; many of them have yet to lose a first-degree relative. No one I know has needed anything more than a hip or knee replacement. I have a great support system if hearing things like "cheer up" are supportive to you (they aren't to me, even though I know my friends mean well). There is no one who "gets" this. I get messages from my buddies nearly every day asking how I'm doing, and when I say that I'm doing okay but still having a hard time, the follow up is "I thought you would be better by now." So, I have a great support system who I have to re-educate daily, which is exhausting. I think I'm also realizing that my parents are old and infirm, especially since they've moved into their apartment and since my dad fell and had his surgery (he's doing great, by the way, and is off all pain meds including Tylenol - at the one month mark). They have been completely out of my life physically since I can't get to them and they can't get to me, so I'm sort of pre-grieving their ultimate absence.

Anymore, I surprise myself when I laugh. I've noticed that I don't laugh anymore, or at least not as much as I used to. I'm a huge joker and love comedy of all kinds. There isn't much I find funny lately.

I see my doctor on March 3rd and the narcotics will be stopped at that time. I'll be allowed to continue the gabapentin and the muscle relaxants, but will only have Tylenol for pain. I'm hoping that getting rid of the oxycodone will alleviate the depression/hopelessness/sadness - I guess we'll see. If this continues, I plan to seek grief counseling to try to cope. Even though my bosses have been incredible with me and are letting me work from home, from bed, I don't see any way right now of going back to the office next month.

I'm waiting to turn the next corner and hope that it is soon. My brain chemistry has always been a little wonky, but it sure feels right now like this is the new me and the best I can hope for. You all will tell me I'm wrong, but that is how it feels.

Now, I'm off to take my multivitamin, the calcium, and the vitamin D. I'm also a person who needs sunlight, so being low on D is bad for my mental state (I took 4,000 IU daily preop for years). Going to have to bring the vitamins into the bedroom so I can remember them.

I hope you all are doing well. I pray for all of us daily.

In order to leave this on a somewhat positive note, I had my first unaided (not due to a laxative) BM last week. I hope to quit the laxatives soon.

Take care, everyone. Even though I'm not posting much, I think of you all daily and pray for everyone. It occurred to earlier this evening (before midnight and the date changed) that it was a Monday and some poor soul was having scoliosis surgery at Barnes with Dr. Buchowski. He only does those surgeries on Mondays. Anyway, I prayed for that person, too, whomever he/she may be.

Love and hugs to all of you,
Fifa

Lizardacres
02-10-2015, 09:29 AM
Fifa,

Good for you for listening to your own body and not the nurse and ditching the Valium. I would definitely not call Valium a mood stabilizer, it is a sedative, and if your mood is low it can cause depression. Also, this class of drugs prevents memories from being formed which is one reason it is so useful for medical procedures.

Have you thought about going to your PCP and asking to try an antidepressant? I started taking Effexor many years ago as an adjunct to pain control. I found it really dialed down the pain and helped me in coping with all the difficulties the scoli was causing in my life. I take 75 mg which is considered a low dose. I was also taking klonopin and Vicodin, which are downer drugs and the Effexor seemed to balance out the downer effects of those drugs. That combo of drugs kept me quite functional. Many here got injections to hold off surgery, but I managed with drugs, probably because I had been seeing a neurologist and that was his approach.

I too am starting to feel the effects of fusion, particularly when walking. It's really odd being forced to move a different way but it's reassuring that things are proceeding as they should.

But seriously, consider an antidepressant, it just might make a world of difference for you and readjust your brain chemistry after all that Valium.

Susie*Bee
02-10-2015, 10:03 AM
Fifa - my heart goes out to you. What you are going through is very difficult, but for the most part they are problems that many people have dealt with on here over the years. The depression is something that is more of a concern and something you should probably speak with the doctor about. If the nurse didn't seem to pick up on it enough to mention it to your surgeon, maybe you should talk to your PCP about it. It is probably caused by the medications, but depression, caused by anything, is a serious problem.

Some suggestions, in case you are not already doing so: keep a diary of your daily meds. Check them off when you have taken them. That will help you remember to take your vitamins and calcium and not get mixed up on whether you took anything already or not. You can just list your AM and PM ones and the vitamins and calcium and the date... and voila! Keep track of everything-- your stool softener, milk of magnesia, etc. Then you have that as a reference if needed.

It is good that you are doing well pain-wise. Hooray! As for having been a bit more energetic before, nothing can undo that, so just move on. You have your new mindset, you know now about not bending and twisting. Don't "take to your bed"... The best thing for you is to walk and have a normal life. Being active will help with your healing plus brighten your day. I know you said sitting is not comfortable. Try rotating things a bit, (sit, stand, lie down for awhile) or getting out of the house if possible and meeting a friend-- or having someone over. It might surprise you how you can put up with discomfort a little better if you have someone to talk with.

As far as memory goes, there are several (?) threads or posts on here that discuss that. I know that most people just chalked it up to the long surgery and the anaesthesia. It does a number on many people that way. I'm sure you can do a search and see that you are in the company of many, many others who shared the same problem.

As for weakness, and feeling hopeless... I think I can give you some help there. I am sure that everyone thought I was nothing but a wet blanket the other day when a new person asked about her chances of going back to school (as a teacher) not too long after her surgery, just for a short-while, and for their graduation from 5th grade. She was having a long fusion with lots of osteotomies... I didn't want to bum her out, but she asked for ideas on the reality aspects. Maybe she can. I couldn't have. I thought I would be able to go back to school as an active librarian/teacher at 3 months post-op, only to discover I was way too weak and there was no way I could possibly survive a day's work at school... (Hey, I used my shower seat for 5 months!) If you do searches, you might run into my "turtle and hare" thread -- some people seem to bounce back quickly from this surgery and others of us take awhile to heal. The nice thing, barring complications (yes, there unfortunately are some people such as Susan, but she's getting there) is that even the turtles eventually regain their strength and get to the finish line. The goal isn't to see who gets there first, it's to have your curve stabilized, usually the curve is straightened a fair amount, and often (not a guarantee) there is either no or less pain than before. HOPE? I tended to look behind me for hope. To see how far I'd come. I kept a scrap book, so that made it easy. I could see the pictures... in the hospital, barely managing, watch the progress. You are so much farther along now. Don't lose sight of that! Sometimes it's such a gradual thing that you can barely see any progress at all. Yes, I got discouraged also. It's a slow healing process. And at the end of that first YEAR, I thought, well, I guess this is what it is... I sure have a lot of limitations!!! But as I, and Ed, and tons of others will tell you-- it keeps getting better. Year after year. I think the end of year 3 was my real year of "ta-dah" -- I have reached my normalcy, although I still continue to improve. DO NOT GIVE UP HOPE, EVER! It just takes time. And work. I worked hard that first year, walking and exercising-- but only exercising after given the go-ahead (at 6 months my surgeon let me start on arm and leg strengthening PT).

So-- you have people that say things to you? I had people at my church, at 8 months post-op, ask "what went wrong?" Sheesh. You just have to explain that they cut your back open, fileted it in a sense, kind of chopped at your vertebrae, drilled holes, inserted rods, put numerous set-screws, totally re-set your spine, sewed you back up, and now everything has to learn its new place and heal. It may take about a year. Show them a picture of your x-rays if you have one. That should keep them quiet... Of course, I didn't think of that at the time either. I read on here of others doing things like that. (smile)

Since you are a person of prayer, I would suggest you find a prayer partner you can confide in and ask them to hold you up with your depression. If not, you have all of us who pray. I will pray for you, Fifa dear.

And it sounds like it's time for you to have a Potty Party! Yay! Here's to many more unaided BMs! Take care of yourself and know that we care. Hugs, Susie

jrnyc
02-10-2015, 01:43 PM
valium is used as a muscle relaxer by some doctors...
including some psychiatrists...
good or bad....that is one of reasons valium is prescribed...
often on very limited basis

jess

golfnut
02-11-2015, 06:27 PM
Susie,
Thanks for staying active on the forum. Your input is so helpful for others. I, also, accepted that at one year post-op, things were as good as it would get and was pleasantly surprised to improve after year 2 and year 3!

PeggyS
02-11-2015, 06:43 PM
Hi Fifa!
I pray you'll be able to see some steady progress. I read your post last night & I've been thinking about how I want to respond. I remember seeing a thread about a study for PTSD associated with major surgeries like ours. Your body has had a traumatic shock, especially with being released from the hospital too soon and all the pain meds you were on. You mentioned grieving your old self and possibly seeing a counselor - I think counseling could be very helpful. I've used it many times. know it's hard to move and sit, but can you see some positives? Are you straighter? You had a big weight loss - was that a good thing? Do you need a new outfit? (Of, course!)
I like the idea of carrying a copy of your X-ray to help friends try to understand what a major surgery this was. I have an xray photo in my purse. People hear, 'back surgery' & think a couple of months recovery, at the most! Once they see the extensive hardware, they might get a glimmer of what you're going through to heal.
Have you searched for a house cleaner? If you have Groupon or Living Social in your area, they have good deals. I used those to try out a few companies prior to surgery.
Your PCP may be able to write a script for PT. I have been fortunate enough to have had PT right from the beginning. The therapists are a good source of helping me keep my 90* restriction. I've ask them to watch me sit down, get in & out of the car, etc. to see if I'm doing it correctly.
If the depression doesn't decrease as you wean off your meds, please see your PCP. Sometimes people need a little boost with antidepressants, temporarily, to get back on even ground.
You have lots of support on the forum - it's just not the same as in person.
I'm sending prayers & hugs!
Peggy

fifa
04-13-2015, 03:34 PM
Hi, everyone -

I am SO SORRY that it has been two months since I posted, but what a difference two months makes. LOL

Re-reading my posts from February, it is hard to believe that is me...that I wrote them. It is funny, but some things are the same as they were two months ago, and some things are different (as in better!).

First of all, it was funny to re-read what I wrote about Tylenol and finally being able to tolerate it (albeit with aid from Zofran). My pain reliever of choice preop was ibuprofen - I never have used Tylenol. Anyway, at the five month mark, I can say that my chief complaint is headache. We've been keeping very detailed records since I came home from Barnes, which I would highly recommend to anyone going through such a surgery. It is nice to be able to look back and see exactly what I took, when I had a headache, pain scale, activity level, input/output, etc. Hubby did a simple Excel spreadsheet, which I added to because it was so easy to lose track of my last BM, meals, etc. Anyway, I kept at it and still use it.

In looking at my records, I can tell you that two weeks ago, I switched from oxycodone to Percocet. My local primary care physician is managing my meds now. My PCP is hesitant to write for oxycodone and prefers to write for Percocet. Since starting the Percocet, I've had a raging headache nearly every day - only one headache-free day in two weeks. Before the Percocet, I was taking one Tylenol per day in addition to the oxycodone, and was having frequent (but not daily) headaches. I stopped taking the Tylenol when I switched two weeks ago to Percocet (as you all know, Percocet is 5 mg of oxycodone and 325 mg of Tylenol). Also, in the last month, I have noticed some hearing loss (I'm 51) and last night especially noticed a lot of ringing in my ears. So, last night, I read up on "rebound headaches" and am quite confident this is what is going on with me. I had been using the last of the 5 mg oxycodone that Dr. Buchowski prescribed, taking only one-half of a 5 mg oxycodone once a day. I don't know if it is the Tylenol in the Percocet that is causing the headache or the oxycodone - both can cause rebound headaches. So, my goal this week is to break the half tablets into fourths and use them as sparingly as possible.

Pain management is tough in the best of circumstances, but right now, trying to increase my activity level also increases my pain. Consequently, I'm spending more time in bed than I should. I still cannot sit through an eight-hour day at work. I'm working from the office four or five hours a few times a week, and working the rest of my time from home, from bed. Riding in the car is still difficult. Standing and walking is extremely difficult.

My mood and outlook are completely different than they were two months ago, and especially from four months ago. Since I'm not taking any muscle relaxants or gabapentin anymore, life is a whole lot better. I'm not a big user of meds to begin with, as I don't care for being "altered." Right now, my goal is to walk more, sit more, and not take pain meds of any kind (even Tylenol). I asked Dr. Buchowski what I could take instead of oxycodone, and there isn't anything. They don't want me to use Tramadol as it can interfere with the fusion. There is nothing over the counter except Tylenol. They have suggested I use gabapentin again and muscle relaxers, but I'll be darned if I'm going down THAT road again. LOL The muscle relaxers just ruined me.

My memory is still wonky and I don't know if it will ever come back. I just don't feel as "sharp" mentally as I did before surgery. This may simply be that I'm still taking oxycodone and may improve once I stop that. Will keep you posted.

My surgeon recommended a laxative after surgery, but I've found that a daily stool softener works much better for me, especially while on the narcotics. The stimulant laxatives like Dulcolax and MOM caused a lot of cramping and pain for me, plus folks can get dependent on it. Dulcolax makes a stool softener, so that's what I use. My bowels move daily again - hooray! No more impactions!! WOW, was that a nightmare! LOL

I still use a shower chair at the five month mark. I'm still down nearly 30 pounds and two dress sizes, which I needed (I'm not unhappy about this). I can't eat like I used to. Still have a hard time with sugary foods and I still can't drink anything carbonated. I think my soda habit, even though diet soda, made me feel like I was hungry when I was not. Hopefully, as I increase my walking, I can lose some more weight. My muscles are non-existent in places where I had muscles before...like my calves and my glutes. My rear end is gone and butt cheeks are kind of floppy (sorry if TMI). LOL The walking will help with that, I'm sure.

The only thing I'm sad about right now is that I thought surgery had cured my horrible preop rib pain. When I woke up from surgery, I was amazed that I was rib-pain-free, and credited the surgery with this great news. As it turns out, the lack of rib pain had everything to do with not sitting or walking. Once I've resumed these activities, the rib pain has returned, albeit not as bad as it was preop. That's really the only surgical thing I'm most unhappy about. Although I can't clean myself up the "same" way after toileting as preop, I've adjusted to using a two-handed technique that works just fine, and I'm grateful to be able to reach myself at all. (winks) Suffice it to say that I used to wipe completely from the front. Now, I wipe the front from the front with the left hand, and reach around to wipe the back with my right hand. Sorry if this is TMI. I was so worried about not being able to take care of my own needs, so maybe that will help someone else.

Even with the shower chair, I still cannot reach my legs in the shower to shave them or shave my toes. However, the good news is that I have an electric razor, so I can shave my legs and toes while lying in bed (on a towel) by sort of crossing my legs while lying down. I can't yet manage my own toenails in an aesthetically pleasing way - I leave a lot of jagged edges. LOL Someday soon, I'll go for a pedicure.

I've learned not to care about the condition of my house, but have yet to learn how not to care about the yard. I try not to look at it and just look forward to next spring when hopefully I'll be all healed up physically (and mentally).

Trying desperately to think of what I've forgotten to say. (smiley) I thank you all for your support and your prayers, good wishes, and fantastic advice. I couldn't have done this without you all!!!!

Oh, and my dad is doing great! He goes to physical therapy twice a week (they are working now on his upper body strength). He had a cervical fusion and spent quite a lot of time in the hospital preop and postop. You'll recall that he fell the Friday before my surgery was scheduled on Monday, so he spent the month of November in the hospital waiting for the spinal cord swelling to go down so he could have surgery. He had surgery in the middle of December, so he was down a long time and has lost 50 pounds. His main problem now is debilitation, but he is slowly gaining back some weight and some strength. His surgeon, a neurosurgeon here, told him that they would consider him recuperated in two years, so my dad was very encouraged by this. He is excited to know that he can expect improvement up to two years out (like me, he has been discouraged by his slow progress). Thank you all for your prayers!!

I'll try to post in this thread a little more regularly and get back on the boards, too. Thank you all for everything - I hope you are all doing well!!

Love and gentle hugs,
Fifa

PeggyS
04-13-2015, 03:48 PM
Hi Fifa!

Sooooo good to hear from you! I'm glad you're seeing improvements.

It's great to have the mental fog lift. Sometimes mine is still there - I keep telling people it's the anesthesia. That explanation is getting a little old!
My husband has ear ringing as a side effect of Tylenol. I hope those headaches stop!
Don't be in a hurry to go back to sweets & diet soda. I just watched the documentary: Hungry for Change. (Available on Netflix) I need to kick the sugar habit!

fifa
04-13-2015, 04:10 PM
Hi Fifa!
I pray you'll be able to see some steady progress. I read your post last night & I've been thinking about how I want to respond. I remember seeing a thread about a study for PTSD associated with major surgeries like ours. Your body has had a traumatic shock, especially with being released from the hospital too soon and all the pain meds you were on. You mentioned grieving your old self and possibly seeing a counselor - I think counseling could be very helpful. I've used it many times. know it's hard to move and sit, but can you see some positives? Are you straighter? You had a big weight loss - was that a good thing? Do you need a new outfit? (Of, course!)
I like the idea of carrying a copy of your X-ray to help friends try to understand what a major surgery this was. I have an xray photo in my purse. People hear, 'back surgery' & think a couple of months recovery, at the most! Once they see the extensive hardware, they might get a glimmer of what you're going through to heal.
Have you searched for a house cleaner? If you have Groupon or Living Social in your area, they have good deals. I used those to try out a few companies prior to surgery.
Your PCP may be able to write a script for PT. I have been fortunate enough to have had PT right from the beginning. The therapists are a good source of helping me keep my 90* restriction. I've ask them to watch me sit down, get in & out of the car, etc. to see if I'm doing it correctly.
If the depression doesn't decrease as you wean off your meds, please see your PCP. Sometimes people need a little boost with antidepressants, temporarily, to get back on even ground.
You have lots of support on the forum - it's just not the same as in person.
I'm sending prayers & hugs!
Peggy

Hi, Peggy!!!

I think of you every day and pray for you! Sorry for the delay in this response.

At my last visit with Dr. B, I had the radiology folks there print out my last x-ray, which I do carry with me. I've found it invaluable to try to explain to other people what I've been through. I can't remember if I said this before, but I got a third rod "dominoed" next to my rod on the left side in the lumbar area, which is better explained when I have the x-rays with me. When people see all the rods and screws, especially the pelvic fixation, they have a better understanding of the magnitude of this surgery. As we've all said before, most folks know someone who has had a diskectomy or maybe even a fusion, but they have very little understanding of this type of procedure and the extent of the instrumentation. It has been exhausting being back at work - my coworkers, who are wonderful, all want to know the details, which can occupy a great deal of time. So, I sort of limit my comments now to the fact that I'm doing great and show them the x-rays. That cuts down on the time spent telling my story over and over. (smiley)

I never did hire someone to clean but still might. I've learned to not care as much as I did before...to accept what I cannot change. LOL I just simply tell myself that I'll do it when I can. Hubby will do whatever I ask of him, but he's done so much that I cannot bear to ask for more. It will get done when it gets done...in the words of Susan, it just is what it is! I will, however, have a yard worker soon. I cannot bear the sight of all my perennials trying to bloom through a thick layer of leaves. I'm not even considering trying to do anything out there myself, although I sometimes think I could probably run the leaf blower. LOL I sure couldn't bag any leaves after I had collected them anyway. If the yard and the house are my main worries, then I'm both lucky and grateful.

I'm overjoyed at the weight loss that continues! I've lost another five pounds in the last couple of months and am down two sizes. I've ordered some new clothes and have never looked better. Although I don't know how much height I've gained, I've gained enough that I don't have to go up on my tiptoes to kiss my husband (he's 6'5"). My eating habits have changed for the better - I'm more of a grazer now than an eater. Hopefully, once I start getting in my two miles per day, the weight will continue to come off. Right now, I'm interested in toning up - my muscles are floppy!

I did consider counseling, which I'm a huge believer in (my undegrad and grad major). I had one major depressive episode back in the early 1990s which turned out to be mostly due to a reaction to an antidepressant prescribed by my gynecologist (Prozac). I was depressed because I was having a hard time getting pregnant, so I took Prozac, which really helped the first time I took it. I weaned off and stopped taking it (didn't want to try to get pregnant while on Prozac - no one knew at that time if it might harm a baby and I wasn't willing to chance it). I was off it for about a year and then started it again. When I restarted it, I was flung into the pits of despair and couldn't leave my house. I finally ended up seeing a psychiatrist, who prescribed a different antidepressant (Effexor), which turned my brain chemistry around. I weaned off that and have never taken another antidepressant again. I mentioned this prior ordeal because at that time, seeing the psychiatrist, I found out my brain chemistry is different (the doctor said, and I quote, "You have a special brain.") LOL Hubby and I still joke about my "special brain." (smiley) Drugs sometimes do to me the exact opposite of what they are supposed to do. Sorry for the long story, but in short, I knew that my brain just couldn't handle the multiple medications I came home on. So yes, while I'm a huge believer in counseling and consider it extremely beneficial, my first priority was to eliminate brain chemistry issues and then seek counseling if the depression persisted. Thank God it hasn't. As soon as I stopped the muscle relaxants, the depression began to lift. I say depression - it was more a feeling of being hopeless.

I think my body and my brain are trying to cope with what has happened, and I agree about the post-traumatic stress. This was a huge surgery, the magnitude of which I'm still trying to comprehend. I've learned to go easier on my self and watch my self talk (not focusing on what I can't do).

I'm heading over to your thread to see how you are doing. Hope all is well with you!!

Take care!
Fifa

fifa
04-13-2015, 04:24 PM
Fifa,

Good for you for listening to your own body and not the nurse and ditching the Valium. I would definitely not call Valium a mood stabilizer, it is a sedative, and if your mood is low it can cause depression. Also, this class of drugs prevents memories from being formed which is one reason it is so useful for medical procedures.

Have you thought about going to your PCP and asking to try an antidepressant? I started taking Effexor many years ago as an adjunct to pain control. I found it really dialed down the pain and helped me in coping with all the difficulties the scoli was causing in my life. I take 75 mg which is considered a low dose. I was also taking klonopin and Vicodin, which are downer drugs and the Effexor seemed to balance out the downer effects of those drugs. That combo of drugs kept me quite functional. Many here got injections to hold off surgery, but I managed with drugs, probably because I had been seeing a neurologist and that was his approach.

I too am starting to feel the effects of fusion, particularly when walking. It's really odd being forced to move a different way but it's reassuring that things are proceeding as they should.

But seriously, consider an antidepressant, it just might make a world of difference for you and readjust your brain chemistry after all that Valium.

Hi!!!

Long time, no response from me. I'm so sorry!

I found your post to be very helpful (see my response to Peggy with regard to brain chemistry and my previous experience with antidepressants). I agree with everything you said! In the past, I needed a different class of antidepressant to change my brain chemistry back. So far, I wouldn't consider it at this time. My brain chemistry seems to be okay since stopping the muscle relaxers (especially Valium). I do still have memory problems, so I was glad to read what you said about that class of drugs keeping memories from being formed. That is the best description so far as to what happened/is happening to me.

In re-reading some of what I posted, it seems surreal, like it wasn't me who was posting. I am glad I posted (I kept a journal here at home, too) so can see how much progress I've made. I only have bits and pieces of memories from both hospitalizations. I remember more from being at Barnes for surgery than I do from being at Boone for the resulting ileus. I remember the ambulance ride home from St. Louis, but I don't remember the ambulance ride three days later to Boone (or much from that hospitalization). It's weird. I feel like it shouldn't be spring...like I'm still waiting for Christmas (we didn't celebrate Thanksgiving or Christmas). It is just a weird, surreal sort of feeling that I have now. Definitely not depression, just like an "out of body" experience. LOL It's like this surgery happened to someone else. I'm grateful to "her" for having done it!!!! God bless her for what she went through to help me!! LOL I'm laughing as I type that. Sometimes, it is hard to believe I'm on the other side of surgery.

I also feel the effects of the fusion. The outside rims of my pelvis are sore to the touch. Sort of like where you would put your hands on your hips. I'm sure that is from the pelvic fixation. I wake up stiff in the morning and especially feel the hardware when I walk and when I sit. My feet still burn and my legs go to sleep while sitting for five or six minutes on the toilet. I have icepick jabs now and then, mostly in the hips and groin area, but not enough to warrant taking anything for nerve pain. Oh, and I'm still numb in the lumbar area and butt and still have the "board nailed to the butt" that everyone talks about. These things are slowly getting better, but I'm very aware of the hardware. It feels like I'm wearing an iron girdle on the inside. My iron girdle feels heavy, too, like I'm wearing a belt with heavy weights attached.

The hard part so far with physical activity is that I feel like I need something for pain after I've been active. This is tough because I'm trying not to take anything for pain. So, I spend more time in bed than I should. Going to try to work on that this week. I've added an activity level to my meds spreadsheet so I can track how far I'm walking. Hopefully, that will help.

Hope you are well and things are going great with you!! Take care!

Hugs,
Fifa

fifa
04-13-2015, 04:48 PM
Fifa - my heart goes out to you. What you are going through is very difficult, but for the most part they are problems that many people have dealt with on here over the years. The depression is something that is more of a concern and something you should probably speak with the doctor about. If the nurse didn't seem to pick up on it enough to mention it to your surgeon, maybe you should talk to your PCP about it. It is probably caused by the medications, but depression, caused by anything, is a serious problem.

Some suggestions, in case you are not already doing so: keep a diary of your daily meds. Check them off when you have taken them. That will help you remember to take your vitamins and calcium and not get mixed up on whether you took anything already or not. You can just list your AM and PM ones and the vitamins and calcium and the date... and voila! Keep track of everything-- your stool softener, milk of magnesia, etc. Then you have that as a reference if needed.

It is good that you are doing well pain-wise. Hooray! As for having been a bit more energetic before, nothing can undo that, so just move on. You have your new mindset, you know now about not bending and twisting. Don't "take to your bed"... The best thing for you is to walk and have a normal life. Being active will help with your healing plus brighten your day. I know you said sitting is not comfortable. Try rotating things a bit, (sit, stand, lie down for awhile) or getting out of the house if possible and meeting a friend-- or having someone over. It might surprise you how you can put up with discomfort a little better if you have someone to talk with.

As far as memory goes, there are several (?) threads or posts on here that discuss that. I know that most people just chalked it up to the long surgery and the anaesthesia. It does a number on many people that way. I'm sure you can do a search and see that you are in the company of many, many others who shared the same problem.

As for weakness, and feeling hopeless... I think I can give you some help there. I am sure that everyone thought I was nothing but a wet blanket the other day when a new person asked about her chances of going back to school (as a teacher) not too long after her surgery, just for a short-while, and for their graduation from 5th grade. She was having a long fusion with lots of osteotomies... I didn't want to bum her out, but she asked for ideas on the reality aspects. Maybe she can. I couldn't have. I thought I would be able to go back to school as an active librarian/teacher at 3 months post-op, only to discover I was way too weak and there was no way I could possibly survive a day's work at school... (Hey, I used my shower seat for 5 months!) If you do searches, you might run into my "turtle and hare" thread -- some people seem to bounce back quickly from this surgery and others of us take awhile to heal. The nice thing, barring complications (yes, there unfortunately are some people such as Susan, but she's getting there) is that even the turtles eventually regain their strength and get to the finish line. The goal isn't to see who gets there first, it's to have your curve stabilized, usually the curve is straightened a fair amount, and often (not a guarantee) there is either no or less pain than before. HOPE? I tended to look behind me for hope. To see how far I'd come. I kept a scrap book, so that made it easy. I could see the pictures... in the hospital, barely managing, watch the progress. You are so much farther along now. Don't lose sight of that! Sometimes it's such a gradual thing that you can barely see any progress at all. Yes, I got discouraged also. It's a slow healing process. And at the end of that first YEAR, I thought, well, I guess this is what it is... I sure have a lot of limitations!!! But as I, and Ed, and tons of others will tell you-- it keeps getting better. Year after year. I think the end of year 3 was my real year of "ta-dah" -- I have reached my normalcy, although I still continue to improve. DO NOT GIVE UP HOPE, EVER! It just takes time. And work. I worked hard that first year, walking and exercising-- but only exercising after given the go-ahead (at 6 months my surgeon let me start on arm and leg strengthening PT).

So-- you have people that say things to you? I had people at my church, at 8 months post-op, ask "what went wrong?" Sheesh. You just have to explain that they cut your back open, fileted it in a sense, kind of chopped at your vertebrae, drilled holes, inserted rods, put numerous set-screws, totally re-set your spine, sewed you back up, and now everything has to learn its new place and heal. It may take about a year. Show them a picture of your x-rays if you have one. That should keep them quiet... Of course, I didn't think of that at the time either. I read on here of others doing things like that. (smile)

Since you are a person of prayer, I would suggest you find a prayer partner you can confide in and ask them to hold you up with your depression. If not, you have all of us who pray. I will pray for you, Fifa dear.

And it sounds like it's time for you to have a Potty Party! Yay! Here's to many more unaided BMs! Take care of yourself and know that we care. Hugs, Susie

Hi, Susie!

I found your post very helpful and will look back through the threads for memory loss and the "turtle and the hare." I, too, am still using my shower chair at the five month mark. Probably will continue to use that until I can bathe in November. What I wouldn't give for a real hot bubble bath!!

I have found the daily med list an invaluable tool, and I have added to much to it (and am adding more this week). I track everything I take, my food, my BMs (which I'm happy to report have returned to normal albeit with the aid of a daily stool softener), and my pain level/symptoms. It was because of this list that I noticed the frequency of the headaches I was experiencing that still continue. I have no doubt the headaches are rebound headaches and probably due as much to Tylenol as oxycodone. Now, in order to motivate me, I've added an activity tracker where I can document how far I'm walking. That should help increase it.

One thing I should have mentioned in my update post is that I'm a little shaky when I stand for more than about five or ten minutes. I'm sure this is due to inactivity - my muscle tone has decreased greatly and I know I haven't been doing enough. Did you have this? That's part of why I don't stand in the shower - that and I'm scared of slipping and falling.

I'm just now feeling like I want to work on my activity. In a prior post, I relayed the story about how the nurse scared the crap out of me....when I met with her, she observed me doing many things that I shouldn't have been doing (leaning forward, leaning left and right, etc.). I got scared that I was screwing things up and I did take to my bed. I still catch myself doing things like that, but I just "feel fused" now. Hard to explain. A couple of months ago, I had an occasional very mild pop or something that felt a little crunchy or odd - I don't know how to describe it. It's like how a house settles, maybe - that may be a good analogy. I would log roll out of bed, and when I stood up, there would just be a sensation in the lumbar area, again, a kind of pop-crunch. This isn't happening anymore. So, that's what I mean by "feeling fused." I have little pain now getting in and out of bed and occasionally get in bed without logrolling (I still try to logroll but forget sometimes).

While my recovery is going very slow, I think it is going great, and I'm happy. I'm looking forward to what lies ahead now. My department had a kickball tournament last Friday, and I so wanted to participate (but didn't, obviously). So, I'm getting better for sure!

Thank you so much for your encouragement - it means the world to me!!!

Hugs,
Fifa

Susie*Bee
04-14-2015, 07:22 AM
Dear Fifa-- it sounds like you have really come a long way in these two months! I'm so proud of your dedication at keeping your diary of everything! How clever of you to track it all! At the time, I did jot down (on our calendar) my walking-- "30 min.", etc. and you are so right, it keeps you accountable and on track, because you don't like to see blank days. Ha ha. Oops, missed a day. How disappointing. Right?

I am sorry about the shaky episodes. Can you check with your doctor about possibly having physical therapy for leg strengthening? Explain to him about your shakiness and weakness... Will your insurance cover that? I had become very weak and that was so beneficial to me. I had arm and leg strengthening PT at 6 months post-op. Just make sure the therapist is knowledgeable about scoliosis fusion and never do anything called "bridging". Also, make sure your blood sugar level is ok-- people will get shaky if it is low. I just finished a round of PT for my legs for a different reason and it is always so good. It really strengthens you. Too bad you just can't keep going there!

I am approaching my 8 year anniversary and still always logroll out of bed. (smile) They say that (logrolling), squatting (or going down on one knee), and so many other things we learn to do are the best practices for ALL people for their backs anyway. Best wishes as you continue improving. It sounds like you are doing great! What a super attitude! Hugs!

PeggyS
04-14-2015, 02:01 PM
I didn't know you had a 3rd rod, Fifa!

I'm not limber enough to cut my toenails - I'm having to 'settle' for pedicures! I bought a long handle to insert a razor, so I could reach my legs. It doesn't help. I've added leg waxing to pedicures. Oh, and I've been having neck massages once a month. I guess I'll make it through all this NECESSARY pampering!

golfnut
04-14-2015, 07:30 PM
Fifa,
It is still so very early in your recovery. I kept a daily journal describing what I did physically for the day and how I felt, including everything from constipation to aches and pains. I had a lot of rib pain, tailbone pain, and other aches for at least a year, however, when I would reread my journal, I realized that I was still making progress. It is so slow that you often don't realize it. At a year, I was sure that it was as good as it could get with some aches that I assumed would be permanent. I definitely felt a little better each year. I think you will find your mind getting sharper whenever you can reduce your pain meds. Hang in there!

fifa
05-03-2015, 09:49 PM
Dear Fifa-- it sounds like you have really come a long way in these two months! I'm so proud of your dedication at keeping your diary of everything! How clever of you to track it all! At the time, I did jot down (on our calendar) my walking-- "30 min.", etc. and you are so right, it keeps you accountable and on track, because you don't like to see blank days. Ha ha. Oops, missed a day. How disappointing. Right?

I am sorry about the shaky episodes. Can you check with your doctor about possibly having physical therapy for leg strengthening? Explain to him about your shakiness and weakness... Will your insurance cover that? I had become very weak and that was so beneficial to me. I had arm and leg strengthening PT at 6 months post-op. Just make sure the therapist is knowledgeable about scoliosis fusion and never do anything called "bridging". Also, make sure your blood sugar level is ok-- people will get shaky if it is low. I just finished a round of PT for my legs for a different reason and it is always so good. It really strengthens you. Too bad you just can't keep going there!

I am approaching my 8 year anniversary and still always logroll out of bed. (smile) They say that (logrolling), squatting (or going down on one knee), and so many other things we learn to do are the best practices for ALL people for their backs anyway. Best wishes as you continue improving. It sounds like you are doing great! What a super attitude! Hugs!

Hi, Miss Susie Bee!! (huge smiley)

Thanks for your post. I see the surgeon back in early June, so I am going to ask him about PT at that time. Now that I'm doing more sitting and walking, even though I still am not sitting for a full eight hours (six to seven is about the max now), I'm having upper back/neck/shoulder pain that I didn't have before. I think my body doesn't know how to carry itself now that I'm upright (if that makes sense), so I definitely think I need therapy to re-learn how to carry myself.

I will say, though, that getting in and out of bed is not at all painful right now. I don't have much pain. I take 1/4 of a percocet per day now, and not on any regular schedule, but I tend to take one before I go to work to help with the walking and sitting. It has been hard to increase activities while decreasing meds and seems counter-intuitive to me, but I'm doing it. It is just SO.....SLOW!

Hope you are well - hugs to you!!

Fifa

fifa
05-03-2015, 09:58 PM
I didn't know you had a 3rd rod, Fifa!

I'm not limber enough to cut my toenails - I'm having to 'settle' for pedicures! I bought a long handle to insert a razor, so I could reach my legs. It doesn't help. I've added leg waxing to pedicures. Oh, and I've been having neck massages once a month. I guess I'll make it through all this NECESSARY pampering!

Hey there, Peggy!

Okay...where did you find a long-handled razor insert? You won't answer this fast enough, so I'm headed over to Amazon right now. LOLOL The hairy legs have been an embarrassing problem, plus I haven't wanted to go get a pedicure until my legs were smooth. I've decided to wear slacks and not care. (smiley) But, I will get the handle for the razor for sure!!

So good to hear from you! I would love to go have a neck and shoulder massage, but am just kind of scared still.

Yes, I was amazed by the third rod, too. My lumbar spine was just dust. In hindsight, it is a wonder I put off surgery for as long as I did. I'm blaming "the third rail" for my slower progress. That probably isn't fair. Honestly, I was a fat smoker before surgery, so I'm sure that had/has a lot to do with my recovery. Although I was active, I couldn't walk for more than five minutes or so, and I couldn't stand for any length of time. My current state of health is clearly better. However, I will say that spending months in bed resulted in a lot of muscle loss.

At least finally my mind is better, although I have no memory of things...somehow, it is like we fast-forwarded from December to May. I barely remember being readmitted two days after discharge for the ileus. I remember the air beds at Boone and that they were an absolute nightmare. I don't remember the ambulance ride there now, but I remember that I walked myself down the steps and got on the gurney myself on our front porch. I remember being in the ER, but that is about it.

Hope you are doing great! I think of you often and pray for you!!

I'll try to do better about getting on the forum. Things have been crazy with getting back into the swing of things, going to the office, etc. My parents put their house on the market and there has been just a lot going on.

My ability to "cope" is less than it was before surgery. I used to do a lot of yoga and meditation, but I seem to have lost my ability to focus mentally. It's weird.

Take care!! Giant pain-free hugs to you!!

Fifa

fifa
05-03-2015, 10:08 PM
Fifa,
It is still so very early in your recovery. I kept a daily journal describing what I did physically for the day and how I felt, including everything from constipation to aches and pains. I had a lot of rib pain, tailbone pain, and other aches for at least a year, however, when I would reread my journal, I realized that I was still making progress. It is so slow that you often don't realize it. At a year, I was sure that it was as good as it could get with some aches that I assumed would be permanent. I definitely felt a little better each year. I think you will find your mind getting sharper whenever you can reduce your pain meds. Hang in there!

Hi, Karen -

THANK YOU for that! The rib pain is especially bad. The tailbone pain is getting better. You know, I thought of something on Friday (I had my first appointment with my primary care physician after surgery). I gained a little over an inch in height and am still down about 30-35 pounds (depending on if I use my scale or the doc's). I bought a couple of pair of pants last month and they are already too big. Anyway, I was thinking after the appointment that I probably need to raise my monitors on my desk now that I am taller and sitting taller in the chair. This could be part of my neck and upper back/shoulder pain.

The other positive thought I try to keep in my dulled brain is that it took years for my spine to curve and deteriorate, which they "fixed" in a day's time. All those bones are just settling back into the correct place. (smiley) At least that's what I tell myself.

I feel so much better than I did a month ago for sure. I'm doing more now. The journal really does help me see where I've been, especially those days when I'm feeling a bit low.

Hope you are doing great! Take care!

Fifa

fifa
09-20-2015, 01:18 PM
Hi, everyone -

It has been forever since I've been on the forum. Hope you all are well.

I have had two problems since surgery, both of which are getting better. All in all, I'm very happy I had the surgery and am VERY happy it is behind me! My ability to stand and walk is much improved postop, and standing and walking gets better every day, although I'm still not quite as active as I was before surgery. My activity level is no one's fault but my own. My work got behind while I was out, and it seems to be taking forever to get caught up again.

My main problem now, at ten months postop, is some nagging upper back/shoulder/neck pain. My surgeon, Dr. Buchowski at Wash U in St. Louis, doesn't want me to see a physical therapist where I live (Columbia, Missouri) so he has sent me to a physical therapist in St. Louis. She is wonderful and has helped me quite a bit. Since my fusion was all lumbar and low thoracic, it seems my upper body now doesn't know exactly where it is supposed to be in space. I have very little pain in the low back - I get twinges/grabbing if I move the wrong way (like if I forget precautions and twist or lean more than I should). This is just a sort of a grabbing tightness that goes away almost as soon as it happens...just a little reminder that I shouldn't have leaned or bent that far. (smiley) It is no big deal. As far as the neck and shoulders, it is almost like my shoulders are coming up toward my ears and that I'm sort of hunching forward in the upper back area. The therapist has given me exercises, which seem to help. I'm also supposed to start swimming again, but so far, I haven't been able to fit that into my schedule. I'm also getting massage therapy once a week, which is helping more than anything else I'm doing. However, it has been hard for me to lay flat on my back on the table. I haven't tried getting on my stomach and won't try that probably ever. I see the therapist again in October, so hopefully she will have more suggestions for me then. At that visit, we will work on my gait and my posture. I'm also going to order a "posture bra" to try and see if that helps. This upper back pain is now my biggest problem postop. I think some ibuprofen would help, but I can't have any of that until November at the one-year mark. This upper back pain started in earnest when I began spending more time at my desk at work. I've moved my monitors around and done everything I could do to make my work station ergonomic, but it hasn't helped much. The more I sit at my desk at work, the worse the pain is. Hopefully, we'll find a solution to this soon. It is annoying and unexpected.

The other problem postop is a bit harder to explain, but happily seems to be going away. I've had quite a bit of cognitive difficulties in the last few months. When I returned to work full-time in April, I found that I couldn't do simple math in my head anymore, and I also found that my reading comprehension was pretty bad. I found myself staring at an e-mail and knowing that I needed to read it, and it was like my eyes just scanned the lines but the words didn't sink in. My brain knew that I had a task..."read this e-mail," and so my eyes just followed it line by line, but my brain was off in Tahiti or somewhere. I made a lot of mistakes when I first went back to work, which really upset me. I was easily distracted, too. I would start to respond to an e-mail, and then another e-mail would come in. I would open the second e-mail and start responding to it, ignoring the first e-mail I had opened and started answering. In short order, I had six or eight e-mails open at the bottom of the screen. More than once, I put a reply to one e-mail in a different open e-mail. It was terribly difficult to multitask, and although it has gotten a lot better in the last month or so. I don't know if it is actually better or if I'm coping with it better.

The cognitive stuff scared the living crud out of me. I hadn't thought about any brain trouble after surgery. My preop worries were all about the physical things. I thought I was losing/had lost my mind. When I saw my surgeon in August, I told him that the cognitive stuff was really distressing me more than the physical recovery. He said to me, "Does it feel like early Alzheimer's?" I said, "YES! That is exactly it!" He said, "It is because you had such big surgery. Everyone has this." I began to cry and didn't ask him any more questions, but have a few for when I see him again in November at the one-year mark. I don't know if he meant "big surgery" as in the amount of time I was under anesthesia, the amount of rods/screws, or maybe the amount of pain medications that I took until I finally quit them in May. I had never heard of people still having difficulties with anesthesia effects months and months after surgery, but apparently it happens. Frankly, I think it was all the pain meds and muscle relaxants. Also, maybe it was/is because my brain was focused on healing to where it didn't have enough energy to think. (smiley) It might also have to do with nutrition. Who knows? All I know is that I haven't mentally quite felt like me again. Happily, this is MUCH better now.

I'm very happy with the results of surgery and wouldn't hesitate to do it again if I needed to. While my recovery has been slower than I would have like, it is what it is, and I feel better now than I have in probably 15 years or so. It is still hard for me to believe sometimes that I'm on the other side of this. What I know is that I couldn't have done it without the support I've had from all of you, and I thank you.

I'll try to post more frequently. I think of you all often - I have lots of catching up to do here now that I can read and absorb it better.

Oh, and someone sent me a private message about the bidet that we bought. I would be lost without it! I will post info publicly about what we bought and how we chose it. Yay - another poop thread! (LOL)

Love and hugs to you all!
Fifa

fifa
09-20-2015, 02:19 PM
Hi, everyone -

A lovely person on the board asked me about our bidet, how we chose it, etc. Here's what we ended up doing and why. (smiley)

My biggest concern preop, knowing that I would be fused from the low thoracic area to the sacrum with pelvic fixation, was being able to clean myself after using the toilet. I didn't want to be dependent on adaptive equipment and have to store and clean that, and perhaps even take it with me when I left the house. My bowel issues (ileus/impaction) resolved a few months after surgery, thankfully, so my need for a bidet was purely hygienic.

Since cleaning myself was my one big fear, we addressed it before I had surgery. We did a lot of internet research and finally settled on the Total Washlet S350-E. You can Google it as there are several people who sell it online. The "E" I think means "elongated," and whether you need the E or a different model is going to depend on the size and shape of your toilet. Our toilet seat is elongated (not round), so that was the first consideration when we bought the bidet.

There are many bidets on the market and thankfully the prices have come down. Other countries rely on a bidet way more than Americans do, and as they have become more popular here in the US, the prices are now coming down. I must say that Japan has all the high-tech bidets, and this one was fairly expensive... it was nearly $1,000 when we got it a year ago. I was scared to spend so much money on something that I wasn't sure I was going to need plus something that I didn't know would work for me, but we decided to take the chance and bought the one that had all the features we wanted. You can't return these things, so I would suggest you do your own research and buy the one that fits your specific needs. Also, we found the online reviews very helpful. Some of the American-made bidets were said to have been noisy, which was a consideration for us. We didn't think having everyone in the house hearing the thing running would work for us. (smiley) Places like Lowe's and Home Depot sell bidets, too, but the only place we could find the one we wanted was online. Some online vendors offer free shipping. Again, you can't return this after it has been used, but you can return it if it shows up broken or something.

What I knew when we ordered this was that I didn't want to be blasted with cold water or room temperature water. I wanted warm water. There are two kinds of bidets - those which have a tank and those that don't. We chose a tankless one that heats the water as you use it. I would highly recommend doing that. When a bidet has a tank, you are going to be limited to the amount of hot water you have available to you. When I had an impaction shortly after surgery, I would have run out of hot water pretty quick as much time as I was spending on the toilet dealing with constipation and impaction. Also, the tank on some of these bidets takes up some space, and we didn't want that. So, that's why we chose one that was tankless. If I want to sit in there and blast my bits for an hour, I never run out of water (I've never blasted my bits for an hour). LOL

These things come in all sorts of styles with all kinds of bells and whistles. The one we bought has a light in it. Yes, a LIGHT! LOL I thought this was about the dumbest thing I had ever heard, but it is kind of cool that when I get up in the middle of the night and go to the bathroom, the bidet has a motion sensor on it and turns on a little light as I approach the thing. (smiley) Who knew?? The motion sensor can also raise and lower the lid for you, but we keep the lid open all the time, so that is of little use to us. The one we bought has a self-cleaning feature, too. Every so often, the little nozzle comes out and you'll hear a trickle of water as it washes itself off. Maybe a couple of times a day this happens. It just sends a tiny bit of water through the nozzle - it doesn't spray the room or anything and you don't have to keep the lid down or worry about it spraying everywhere when it cleans itself. Also, when you approach it, the light turns on and the little nozzle comes out and wets down the toilet bowl before you use it. Making the bowl wet above the water line up to the rim of the toilet makes it easier to clean later. Residue rinses away when you flush rather than sticking to the porcelain above the line where the water sits in the bowl.

The other thing I knew for sure before we ordered is that I wanted a bidet with a remote control rather than having the controls attached to the side of the seat. I knew I wouldn't be able to twist around after surgery, so it didn't make sense to me to have all the controls on one side of the seat or the other where I couldn't see them easily and had to struggle to use them. The remote control is about the size of a television remote - probably about five or six inches long. I keep it on the edge of the tub next to the toilet. The bidet we bought has a lot of options with regard to the intensity of the pressure and the position of the nozzle, and I want the controls to all of that in my hand rather than on the side of the seat. I hold the remote in my hand and run the nozzle through several positions at several different intensities before I feel completely clean, and this isn't something I want to reach around to the side of the seat to do. I highly recommend a bidet with a remote if you won't be able to twist and lean after surgery. Our remote is wireless, by the way, just like a TV remote, and is battery operated. I wouldn't want a remote that is attached to the bidet by a wire (don't even know if that is an option).

This bidet looks pretty much like a regular toilet seat except for the hose coming out of the side of it (near the floor so not really that noticeable). It runs on electricity, so you'll need an outlet. My husband installed it and it took only a few minutes to replace our old toilet seat with the new bidet, attach the water supply, and plug it into the outlet. That is all it took.

The seat has a pressure sensor on it, too, so if you get up off the toilet while it is spraying water, it will stop. You can't make it spray unless you're sitting on it.

This has been a life saver for me. Again, toileting issues were my main worries preop and a big reason why I didn't want this surgery. I didn't want to take a chance that I would come home and never be able to clean myself adequately (without adaptive equipment). We resolved this before surgery with this bidet and installed it in enough time to where I got used to having it well before surgery. I just couldn't live without it.

If you have questions, post publicly or privately. I'm happy to help if I can!

Hugs to you and yours,
Fifa

Susie*Bee
09-20-2015, 02:26 PM
Dear Fifa- it's so good to hear from you! You have been very busy! And yes, if you do a search, there have been many people who have had brain fog and memory problems that lasted awhile after their surgeries. I think I remember talk of the long time under anesthesia being the culprit, but of course the meds would contribute as well. I recently read an AARP article on the 10 top meds for causing possible memory loss and I had been taking 4 of them, although I was down to just 3. YIKES! Trying to get off another, but the neurologist has to approve and wean, etc.

It sounds like you have a good PT plan. Dr. B is probably wise in his caution about therapists as some don't understand the limitations and might have you do something you shouldn't. Slow and steady. (smile) You are making good progress! Recovery takes awhile! Have you looked into those stand-up desks? I wonder if you could try one out to see if that would be any better. Best wishes for figuring out what will work out right for you at work. It sounds as if you are doing fairly well for this stage of the game. Hugs, Susie

titaniumed
09-21-2015, 08:00 AM
I hadn't thought about any brain trouble after surgery.


Fifa, I know what you are saying....

The short term memory really gets affected. (and some long term)

At least some of the people that I work with that know me say I forgot more than everyone in the room combined. I guess it feels good to an extent, but in reality it sucks trying to think about some things that I did know in the past. Sometimes, I get completely locked up on certain thoughts...and really have to think about some things for a long time. I have my on and off “mental” days.....and in the late afternoon my mind can shut down at work, where it just doesn’t make any sense being there so I leave. Sometimes at work I can be non-productive and I tell everyone that, and they say its ok, they want me hanging around anyway.

Some data will say 30 days or state some made up timeframe for our chemical normalization after taking our meds.....and its bullshit because they really don’t know about what happens with our brains. I do feel that there are permanent changes or some mental disability from all of this in adults over 50. The hospital told me that I had the strongest medication regiment known to man......

I quit cold turkey because of it, and replaced with nutrition at 6 weeks. March 14, 2008 It seemed the logical thing to do.

Scoliosis surgery recovery for me was more about lower GI management and saving my brain. My spine priorities dropped down a few notches.....

I have had to adapt to all of this. I guess I am fortunate that my spine problems have been repaired, after all that was the main goal.

Its good to hear your doing ok

Hang in there

Ed

jackieg412
09-22-2015, 07:21 AM
Good to hear from you.

cathydrew
09-22-2015, 10:02 PM
Wow I thought I was crazy but I too was fixated on toilet issues prep, and I, too, got the Toto Washlet I love it, hubby and I installed it...I was totally independent the moment I got home. Thing is, apparently I have super long arms because I don't need any adaptations any more, even being fused T3-S1 with fixation I can "take care of business" LOL which enables me to have freedom out in the world, but at home I still use the Washlet all the time!

PeggyS
09-24-2015, 07:48 PM
I've been wondering how you're doing?! I'm glad that, overall, you're happy with your surgery.
How often are you going to St Louis for PT? I'm hoping for a green light for aggressive PT at my 1 year appointment.
I had some mild cognitive issues at my little part-time job. I couldn't add in my head, either & I kept making mistakes. At one point, I almost quit because it seemed like a cop-out to keep blaming anesthesia. I kept plugging away & now things are ok.
I wonder if I'll ever get my metabolism back?!
I take 3 mile walks a few times a week. It's wonderful to be able to stand & walk as long as I need to!
It's so good to hear from you!!
How's your dad?